TALK TO A
Don and family
Insert: Don - 30 days after his bleed and 41
days in a coma, with a weight loss of 60+ pounds. Don's grandchildren, Richard and Dinah
My name is Don Dickensheet, and as you can tell by my last name there are not to many of us so don't blame Bill if Im not a "CLASSY" guy! I had this picture taken before going to church one Sunday with my two favorite people, my wife and Son! The clip on tie Im wearing is definately classy as it is a hand me down from my brother in law from when he was an airline pilot and had to wear a costume! I was in the Navy for 21 years and 99% of my time was overseas I lived in the Philippines (My wife's homeland) Japan, Guam and finally settled in Hawaii on the little island of Lanai, try to bear with me as I believe in this site as it has helped me so much. But I just can't say PC things and if somebody gives me a hard time I would find it very hard to tell them they were full of FECES! I grew up with Howdy Doody, Ed Sullivan and smoked plain end Camels for 30 years if that tells you anything.
18 March 2002
On August 27, 2000 I was very happy here on the island of Lanai in Hawaii. I had just turned 47 on th 13th of August and as I recall the 27th was a Sunday and we were in my yard eating dinner when I told my friend to stop by in the morning and pick up some building materials.The next morning came and he came to the house and was knocking on the door when my neighbor took notice as my truck was still in front of the house he knew I hadn't left for work yet. Lucky for me they decided to investigate and came into the house and found me unconscious.
My friend took me to the emergency room here and that's where the real fun began. I don't know how long it took for them to stabilize me enough to medivac me via heliocopter to Honolulu. Somebody finally notified my wife that I was all messed up and also my son who was overseas with the Navy. I was in the ICU at Straub hospital in Honolulu for six weeks in a coma from 8/28/00to10/8/00.
The thing that's really scary about it all is that if it hadn't been for my wife and son I wouldn't be here today. At one time during the ordeal the doctors wanted to unplug me and send me back to this island to die. My wife wasn't buying none of their theories. In fact they were all pretty sure that if I did wake up I would be a vegetable at best due to the damage my brain suffered. In fact she was so stubborn one of the nurses had to admit to her that she was right about me waking up.
I guess the hardest thing on my part is that my life as I knew it has changed I was in the Navy for 21 years retired and was working on a second career when this happened. I've always been active racing off road motor cycles, free-diving, spear-fishing now just watchingT.V. is for the birds.
I finally got to come home to Lanai on 12/23/00. At the time I was in a wheelchair and being tube fed pigeon puke. They wouldn't let me eat or drink said that I might choke (I tried to reason with these sawbones I would have been dead a long time ago if I choked on food as much beer as I drank). Well I went from a wheelchair to a walker to a cane, and I drive. I sold all my motorcycles which broke my heart. Last August I had to go back to Honolulu to have a brain tumor removed - what a deal! Some guys have all the luck. At least I wasn't in a coma.
Just a couple of months ago I had to go back to Honolulu for a Gamma Knife procedure because they left a piece of the tumor in my head. I told them that this is like somebody came to my house and used the toilet and didn't flush it. They don't see it that way I guess.
What I want to know is do you ever go back to feeling like you did before this aneurysm?
Update: 6 Aug 2002
Hi, well it is getting almost to the 2 year point since I had my aneurysms so I thought I would let you know how it is for me now. First of all I for one am very grateful for this website, me being the typical American tough guy used to pooh-pooh such things as support groups, but hey let me tell you after having this happen to me on an island with a population less than 3000 and as far as I know me being the only aneurysm survivor here it is my window to recovery. As for me I'm still not sure what the deal is, all I know for sure is that I still feel strange. I wish I could describe the symptoms so I could grumble better to my neurologist who I have to see in 2 weeks for a follow-up. But I can't really just put my finger on the way I feel.
Thankfully I am medication free. The only thing I take now is vitamins and I'm real happy about that. Gone are the plastic bags I used to puke in every morning after taking fist fulls of mystery medications. I guess the worst things are that my legs often feel lead-like and not my own. As a result I use a cane and kind of shuffle along. And before this happened to me I used to take great pleasure in playing the guitar but now for some reason my brain has trouble telling my left hand what to do and makes it go spazzo instead of forming chords. This is sad as this was one of my favorite pastimes. But I have to take great pleasure in the fact that I am still among the living.
I was kind of worried about what my calling in this new life might be after waking up from my 6 week coma. And for awhile it looked as if I might end up as a practice dummy for doctors. I had to have a brain tumor removed, laser surgery twice on my left eye, a gamma knife on the noggin to try and kill left over tumor, kidney stones. It seemed like every week, something new would jack me up but hopefully thats all in the past and this year will be pretty much doctor free. Before this happened to me the only time I went is if I couldn't stop a cut from bleeding or had a broken bone (I used to race motorcycles).
Anyway for all of you out there don't give up, no matter what, it may not be perfect but at least its something and something my friends is always better than nothing. Take care and God bless.
Update: 13 Jan 2003
First of all Happy New year to everybody and I just know you all had a better one than me. On 29 Dec I was working with my email and leaned forward to hit my shift key when CRACK my back broke. Well it now seems as if I have the skeleton of an 80 year old man thanks to modern medicine. Since surviving my aneurysm I have almost lost my left eye and now this. It's the gift that keeps on giving. I now have 4 compression fractures in my back.
So for those of you out there still like me trying to get better it might be wise to get a bone density scan before having to endure this pain. It seems as if the steroids and other rubbish they had me on reduced my bone density by 13% since before my aneurysm.
I used to race motorcycles and would crash now and then and walk away, now I break bones just sitting in a chair.
Update: 22 Mar 2003
Hi everyone. In the interest of trying to prevent pain I will post this update. According to the stuff I can dig up in August of 2000 I was placed on corticosteroids following my aneurysm. The following year I was given another course of high dose steroids to control cerebral edema following my brain tumor operation. The results were I now have advanced osteoporosis and on 29 Dec. this last year I had to be hospitalized cause I broke my back just sitting in a chair.
It turned out I had 5 compression fractures in my spine. After getting the run around from my insurance they finally agreed to let me have a kyphoplasty procedure on the 11th of this month to try and help me. It worked out pretty well and I am no longer in constant pain.
Whats this got to do with brain aneurysms? well I don't think I am alone in the things that were done to me following my aneurysm. So if you were given steroids I would highly recommend getting a bone density scan as you do not want to go through the extreme pain I had been suffering from a broken back.
Update: 30 Apr 2003
As I am now approaching the 3 year point of my new life I still have a problem classifying what I am. In some ways it would be easier just to tell folks that I had been shot in the head and lived. This would awe them and put it into a prespective they could understand. And the folks at places like social security would automatically rubber stamp your stuff and tell their co-workers "hey this guys lucky to be alive". I cant just say to somebody "Oh Im an aneurysm survivor" without having to put on a dog and pony show. And since mine were coiled I dont have a big Frankenstienish scar to help tell the story.
Does any one out there have a politically correct term that the average American can relate to. Cause for me its hard to tell people, "Well before I had my aneurysm I used to be able to do this etc." In my mind I just want to say well ya know before God tried to kill me and the doctors messed me up I used to have an active life. Now if someone sees me crawling along with my walker its easier just to tell em I had a stroke and they can process this item instantly.
Update: 06 Jul 2003
Well since yesterday was the 4th I know August will soon be upon us and in August come hell or high water on the 13th I will turn 50 and on the 28th it will be the 3rd anniversary of my brain aneurysm. As I sit here this morning I have to really pause to reflect on how things are now.
My life is so different now, but in some ways it is better. I know for you folks that are bumming out about things that you used to be able to do, this is hard to accept but do it. The way I like to think of it nothing lasts forever and constant changes are part of life, hey when I was little I could get away with crapping in my pants now and then just try it as an adult and see what happens. To all of you out there wondering why? well it happened, and if your reading this you survived, so forget about it and just smile.
To me to think 4 years ago that I would be sitting in front of a computer typing out messages would have been a fantasy, no way! but I now look forward to every morning for the time I get to spend with you all and a special thanks goes out to Dr. Maples who took the ball and ran with it and I never figured that I would have to much in common with a PHD but it just shows how wrong you can be sometimes. So for those of you out there just waking up and trying to come to grips with this new hand you have been delt just remember that there is safety in numbers and you are not alone, may God bless us all.
Update: 05 Sep 2003
Aloha. Well I have kinda been amiss in things over here. It has nothing to do with being busy but just trying to figure stuff out. Well on the 13th of last month I turned the big 50 and the 28th was my 3 year anniversary so let's examine somethings I have come to learn in my new life.
First and foremost never assume the medical fools have your best interest at hand, you are nothing but a commodity dont ever forget that. Sure their are some nice folks out there but the bottom line is its the money not you they are interested in. Right now I am beside myself as the neurosurgeon who was in charge of this whole nightmare has been ignoring me for over a year. I have been trying to get him to provide information to the VA since my case is service connected. I have to go for an annual MRI and a bone density scan so me being the type of guy I am make the appointments well over a month in advance as to get everything done in one day due to the logistics involved, air travel and somebody to assist me.
It was all set up and I was scheduled to go to Honolulu on the 10th of September for a bone scan at 0930, an MRI at 1130, and a meeting with the neuro at 1430. Well the other day I went to our clinic here and a little bird told me to have the gal at the desk check my appointments on her computer. Well they had all been canceled except the MRI! No notification etc. In fact I have already purchased airline tickets, boy I was pissed! I can't blame the receptionist so with bile in my throat and red vision I left. Well after playing press 1 press 2 on the phone for awhile they told me the friggen neuro is going on vacation so they just cancel my appointments? What kind of nonsense is this?
They are so lucky that my Son is traveling with me on the 10th of September as he hopefully will be able to restrain me from doing someone some serious harm on that day, I was able to get them to do the MRI an bone scan at least never mind the neuro and I will use the time that was alloted to go by their patient affairs office and put the fear of God back in their butts. I DID NOT COME BACK TO LIFE TO BE TREATED IN SUCH A MANNER!
So many glimpses come and go. I remember whisperings of "failure to thrive" and other PC terms while I was in my worst hour. Well they better sit up cause this old Chief aint done yet. I may not be able to run but I can probably knock somebody out with my cane quite easily.
Why do you think that when you go for a physical they dont give you an MRI of your head? Hey when I turned 40 they were all trying to stick stuff up my butt to check for cancer. Sure wish they would have concentrated on the other end cause if your brain shuts down your ass soon follows.
There are probably only a handful of folks on this planet who can succesfully cut your head open so that's why we continue to whistle in the dark and ignore your head as we look in your butt and x-ray your boobs. These are all quick fixes and money makers, sorta like running a muffler shop. Just do your best to stay strong so you can combat silly behavior such as this.
Update: 12 Sep 2003
Yesterday I had to travel to Honolulu to get an MRI and bone scan. The whole process has not been handled correctly and the hospital that I am forced to use has really messed things up. So I wasnt in the best of moods after getting up at 0530 in the morning to make a 0900 appointment. Well they hosed everything up at the hospital and were just generally rude about it. When I went by patient affairs to file a complaint before leaving the person was at "lunch". Complaints are not supposed to arise during lunch hour I guess. Sure wish I had to go as I would have loved to pee on her door before leaving. LOL Maybe then they would ensure their office is manned during business hours - amazing concept!
Anyway as you can imagine I was not in a good mood when I got to the airport. Well since today is September 11th I find it only fitting to comment on the rampant lack of common sense that now exists in this country. To get from my island to Honolulu we have to fly on little DeHavilland otters puddle jumpers, no range whatsoever. In fact following 9-11 our airport was deemed unsafe here on Lanai as our parking is to close to the terminal. They made everybody park out in the mud and slog 500 yards to the terminal under the stare of weekend warriors with M-16s ever watchfull that some filipino may have concocted some sort of pieapple bomb to take over a plane that has no range whatsoever. Well I guess somebody finally had enough sense to realize this was overkill and things have been getting back to normal. In fact when you leave my island on this type of aircraft screening is no longer required but Honolulu is a different story.
Since I was going to the hospital and going to have to jump in and out of clothes due to my current abilities I now just wear a Navy flight suit. It is a coverall with zippered pockets so I dont have to fumble with keys wallets etc. Everything stays in one place as I change into gowns and jump through hoops. Well that afternoon when I get to the airport in Honolulu I walk through their magic gate and the buzzer goes off. First I had to ditch my cane before passing through the stupid thing then I had to be pulled aside to be examined more closely. When I barked at the skippy tool in his new federal security guard costume he must have hit the panic button. The next thing I know they had this big Samoan momma telling me all kinds of rude stuff. No common sense whatsoever and her training as she claimed to be the supervisor was to try and talk over you in a demeaning manner instead of look and see what was actually going on mindless robot.
So for all of you folks who are now PHYSICALLY CHALLENGED try to be patient with these idiots Im so glad I served my country for 21 years retired 20% disabled, died and then came back to life to be treated like this. We must really be the nerve center of America here on my island with no traffic lights 3 stores 3 hotels and one gas station. Wonder what I was supposed to blow up? Just be careful as common sense is no longer valued in this country and you just might have a machine gun cane or a rocket powered wheelchair.
Update: 24 Dec 2003
Aloha out there! I figured to boost my overall outlook for the Day and enlist the help of my favorite ELF Bill to get this holiday greeting out to all the family members, especially those who are just barely coping! Take heart! The day we are about to celebrate brings hope! NOBODY knows this better than me! For it was 3 years ago tomorrow (December 23, 2000) they unloaded a 100 pound wreck in a wheelchair here at this islands airport! At the time I had a peg tube installed and was barely alive! But I had gained one small victory and it filled my heart with joy to be home again, a place I was begining to think I would never see again! Tears of joy filled my eyes and I knew then that I might just make it.
Well now today 3 years later I have to reflect on just how blessed I am. As I was fumbling around trying to get a Christmas card off to my 75 year old mother, I enclosed a check and told her to take her friends out for a treat! You see she is at the age where you start losing things, first her husband then almost me, then her daughter and now it is only her and her dog. So I was thinking back that if in 2000 I hadn't awoke from that 6 week coma I guess I couldn't have complained as I had lived a very full life. And at the time of my aneurysm I was at the top of my game. In fact the only thing I have seen in these past 3 years that kinda makes me feel bad is I think it would have been kind of nice to date that J-LO girl a couple of times but other than that believe it when this boy tells you-"Been there done that!"
Sooo for those of you who are out there this time of year wondering how your going to get through it all, know this, take the time to pray and ask for his help it worked for me! And I KNOW I was at the bottom of the list! But if I can do it anybody can. May God bless you all and Merry Christmas!
Update: 05 Feb 2004
Hello. Well it's time for that old nasty sailor to run his mouth again! The thing that moved me to post this update was Phil Burtons post about the trials his father is facing as a result of his loss. I recommended he come here, we are not doctors but if somebody in your family had an AVM or Aneurysm you are a survivor also and perhaps just some little thing will jog your mind to something that was exhibited prior to these tragic events that might help somebody avoid this whole mess!
For example all of my adult life whenever I lay down at night to go to sleep I would always hear a wooshing sound in my left ear but being the type of guy I was back then a six pack of Bud seemed to make it disappear. The times I would go to the Dentist later in life in the Navy they would take my blood pressure in the morning and tell me I had high blood pressure, and want to monitor me so I would go back at noon and night and it was normal, so they just figured a tough old Chief like me was just stressing over visiting the tooth fairies! Well when I retired in 1992 they discovered I was deaf in my left ear! I had known this for some time but my right ear worked fine so good in fact I now only slept on my right side that way I couldnt hear my wife! just the wooshing sounds on the nights I didn't use the red white and blue medication.
Well this puzzled the rocket scientists at the clinic and I don't know if they even had MRIs at the time so they sent me to a speech and hearing clinic at the university of Hawaii and some little Japanese doctor had some musical tongs and they beamed music into my skull and other tricks of magic! But the bottom line was that I was deaf in my left ear and had perfect hearing in my right! This baffled them, and me I was getting tired of their malarky so I offered a reasonable explanation. Since I used to work on Navy jets and I am right handed I would often pull my hearing protection off my left ear in order to hear the pilot yelling at me as I hung on the side of the jet with my right hand troubleshooting while the engine was turning. Well apparently they bought this and I retired in 1992 and kept wooshing away till 2000.
Well in July of 2000 I believe it was I was readying to go to work and had a horrible nosebleed start, so bad in fact I had to drive to the ER with toilet paper hanging out my nose as I couldnt stop the bleeding. This was the first time I was to meet the young man who later saved my life, Dr. Jonathan Gasper. He told me my blood pressure was out of control. Finally the bleeding stopped but did I go for a follow up? He sent me for a cat scan but nothing was said and about four weeks later my aneurysm burst and the rest is history.
What caused my hearing loss after fooling around inside my head was a nasty tumor called a vestibular schwannoma (acoustic neuroma) and every time I would lay down it would cause my blood pressure to go nuts! Once I was up and about it would return to normal in fact once they removed the tumor I had very low blood pressure.
So never assume anything I should have known better as a sailor cause every time you assume you make an ass out of u and me! but life goes on. And besides we have to keep Bill busy as he is planning to build a front porch on his house out of pallets. So if any of you folks got extra TV tables and car seats laying around let him know!
Update: 10 Mar 2004
Well this morning I sit here a messed up brain and a broken back and now a very broken heart to boot. Last night my faithful companion of 9 years left this earth. So let me share my thoughts on this matter so she will come back in mind at least as today is the first day in years that I dont have her here by my side.
All my life except when I was on ships I've had animals around me, and for those of you who are out there who are able, do yourself a favor and get a pet to help you, they are so good at this. You can't imagine the long lonely nights I spent in the hospital just wanting to see my Mi Mi cat appear and curl up on my chest and run her motor. When I finally returned home she was there for me and watched me as I struggled trying to walk and get my life back. And just last year when my back was broken and I was in bed for three months she was once again by me every day. March 11 last year I had to leave her for one night to have my back surgery and I remember commenting to my friend who accompanied me how I wish I could have brought her with me to help calm my fears. All I know is that she gave me strength and helped me to heal.
The Mi Mi cat was born in Lahaina Maui and was a very good mouser. This was to be her downfall as she ate part of a poisoned mouse and almost died as a result a year ago. But I guess she learned a lot watching me and didn't give up and was living with failing kidneys as a result. I now had to feed her a special diet to help her. The Vet told me that the failure would kill her sooner or later but I couldnt be the one to pull the plug on my faithful companion. Well she seemed to recover pretty well and lived a pretty normal cats life the past year until about last week as her kidneys began to shut down.
Yesterday she couldnt really move and wouldn't eat, so as I sat beside her and patted her head and scratched her ears I prayed that if she had to go I understood, she need not worry about me any more. Well the strange thing was my wife was at work and when she returned home I told her the Mi Mi cat was in bad shape. See on my island we dont have a Vet until the weekend when one comes over for Saturday and Sunday. Well she went into our bedroom after eating dinner and sat next to Mi Mi and told her it was OK also to go that we understood and the friend gave a final meow and closed her eyes. When my wife went to check on her after doing the dishes she had gone home to our maker. You see I truly believe she wouldnt let herself go until she knew my wife was home for me.
Animals know so much more than we take for granted and it is my deepest hope that I will see her again someday and I believe she is OK now in another place doing what she does best, caring for people in her special way so those of you that have lost loved ones to this terrible thing take heart, she is now with them and knows all of you as she used to sit here and look at the posts appearing on the screen.
Thanks for listening, take care an God bless...
Update: 14 May 2004
On behalf of Lyndy I shall post this update, For those of you who know me I spent 21 years in the Navy and am retired from them with an honorable discharge and full benefits. Well after all this crap happened to me it became apparent that all this crap was going on and growing in my head while on active duty and they failed to investigate the symptoms. So my aneurysm is "service connected" as it was growing during my tour of duty along with the tumor which probably was caused by the mystery chemicals I used to use that are now all banned by the EPA.
When I first awoke from my 6 week coma I BELIEVED I would get better! LOL Well that didn't happen. My doctor told me to put in for SSDI and that we would get turned down, but after filing an appeal I should get it? NO way! not this boy! I wrote my Congressman and everybody else and got my SSDI in 6 weeks! Didnt need no lawyer either, shoot theyr'e just as bad as the Doctors! And as soon as I was able I shuffled to the VA and got on there case! I retired 20% disabled in 1992 now 12 years later after almost dying 3 times I am now 100%.
The point being made here is to never give up! If I had just sat in my chair none of this would have come to pass and the legions of folks they have on the payroll don't come to you, YOU have to go to them! And dont hang your head about it! It Happens and each and every one of you are entitled to benefits! They give everything away to unwed teenage crack Mommas may God help you if you actually worked for a living! Be polite but be FIRM this is America after all, dont be afraid to task your elected officials to assist you, this is what we pay these folks for!
Right now in a few days I have to get ahold of my Tax Lady so I can get back all the taxes I paid on my military retirement for the past 3 years! Talk about a hose-ex, The IRS vs. the VA with me in the middle and I just know that this will be another 3 year exercise to get whats mine! (VA benefits are tax exempt!) But I WILL stick with it!
One of the reasons I feel we always get the crappy end of the stick is cause too few of us survive these things and like my father always said its the wheel that squeaks the loudest that gets the grease! So start SQUEAKING! and feel free to contact me 24/7 for insults to use on these folks as you get whats YOURS anyway.
Update: 15 May 2004
Well yesterday I rode my new electric tricycle to the post office and was impressed, LOL I didnt like the looks of those Rascals and other such items! Hey! I'm the worlds oldest teenager at 50! I would post a link but I dont want Bill's handlers thinking I am trying to market these things.
This morning I found a website that markets parts for low rider bikes so I think I will start customizing mine. It is fairly stable and has 24 inch wheels and cruises about 8mph on level ground, has a cargo basket between the two rear wheels and I just need to make a pvc scabbard on my front fork for my cane! So if you guys out there want to cruise in style conact me and I will send you the link.
Born to be wild! LOL
Update: 1 June 2004
Well here I sit on the eve of my annual check up, my anniversary is in August but leave it to my clinic to screw stuff up! LOL Whats 60 days anyway when nobody really gives a rat ass as to how you are progressing. I'm just about to the point of blowing these stupid things off and if I didnt have to get a bone density scan that I am very keen to know the results so I can get back to doing risky stuff like racing etc. I would just as soon stay home!
Knowing what I know now I WILL NEVER let them cut on my head again! I might be more inclined to treat these folks with respect if the street ran both ways and in my mind I would think they WOULD want to meet with this cranky old bastard who walked away from a six week coma and a brain tumor, coils, craniotomy's! You name it! Even the Gamma knife trick for all you AVM folks out there! Hell for awhile I thought they were using me to calibrate the machines!
Anyway tomorrow's milestone will be my first ever touchy feely with a Neurologist! This guy better have his act together as I will be in no mood for the mushroom plan I have been under! For those of you who lead sheltered lives this is where they keep you in the dark and feed you bullshit. Anyway just thought I'd share as I wish everybody would start holding these guys feet to the fire! There is nothing wrong with not knowing all the answers but trying to act as though one does is VERY wrong and it is just this old sailors opinion unless we start rattling their cages nothing will improve.
The way I see it is most of us who were lucky enough to survive one of these things had a pretty good brain to begin with and due to this fact we weren't prone to complaining. So now being the strong minded folks we are we let these guys smoke screen us, figuring they must know what they are doing. But me in the immortal words of the WHO-"Won't be fooled again!"
Update: 3 June 2004
Good morning everybody, I shall try to be diplomatic and PC here as I try to describe the sad chain of events that transpired yesterday. The only reason I bother is cause I figure there are a few of you out there who might find comfort in the fact that you are not alone in your line of thinking.
Well as I have said since I live on a pretty undeveloped island this is nobody's fault but my own and in order for me to receive top notch service and consideration I guess I am supposed to sell everything I own here and move to some squalid apartment in a major metropolis some place to be considered worthy! After getting up at 5 in the morning to make a 7:30 flight for a 10:30 appointment alas now due to the governments senseless "WAR" on terror I now have to be at the airport an hour early for a 20 minute flight on a puddle jumper, my only luggage is a sheet of paper with some written questions. After my last adventure with these fools I was so pissed off I actually got through to the head of the TSA goons they now have lurking at every airport in this country. He assured me that I could request an individual screening in order to save myself the hassle of being jerked out of line and manhandled due to the fact that I set off the metal detector at the gate, not to mention they strip me of my cane and expect me to stumble around and remove my shoes all of this after giving them a US military retired ID card identifying me as a CPO USN Retired! No common sense whatsoever! With this ID I can enter the US Subase at Pearl Harbor and piss on a nuclear submarine if I wanted. Why would I be interested in trying to commandeer a De Havlind Otter?
Well they now have on our island a plexiglass booth to isolate you in and the approved government doormats with the footprints printed on them for you to assume the stance as they ran my cane and shoes through the machine. Then this Filipino who can barely speak English comes in with a pair of surgical gloves on and says he wants to pat down my "Sensitive" areas! WTFO! What's this all about am I supposed to have an Uzi in my pants? I never thought I would have to endure such nonsense in my life. So those of you who are still bust up like me be aware there is no common sense anymore.
Well after this encounter I finally board my plane and who is there to greet me? None other than Coffee, Juice, or Bruce? the male flight attendant or whatever they call these guys in todays PC Jargon! Flying Waiter would be more of an apt description. Sir! You must put your cane in the overhead stowage! Joy boy don't know he is talking to a guy who has investigated aircaft mishaps and a cane between the seat and the bulkhead has never caused any deaths! Whatever happened to cute young girl stewardess? At least they were pleasant to look at while they demonstrated the life vests etc.
Well this is setting the tone for my day and upon arriving at Honolulu the airlines counter is closed never mind they are flying customers at the time they dont count since its not yet 8 in the morning and I have to beg a security guard to call me a cab as I can no longer hike the 1/2 mile to the approved anti terror cab parking area! What a joke! Do these guys really think that Habeeb will hire a cab? Shoot last time I was in Washington DC Habeeb was driving the cab! Anyway I finally arrive at the wonderful Straub Hospital on King St. Honolulu!
It's an old building and is constantly being updated and changed around in order to confuse patients. I finally get to the Neurology departments offices at 9:30 for a 10:30 appt. I tell the receptionist that I am from an outer island and if I could get in early that would be fine as time is of the essence as I have a very tight schedule. I get a typical blank stare and a clipboard of silly forms to fill out. One of the stupid questions in todays PC world was - "Do you have any special religious or cultural beliefs we should be aware of?" Shoot yeah! And I wrote in my favorite - Dont Lie to Me!
After an hour of staring at the walls I even noticed they now have a rack of "patient education" pamphlets with stuff like understanding heart attacks! Wonder when the understanding brain aneurysm edition is coming out? Well at 10:30 on the dot a very cute little filipino nurse comes and gets me and leads me back to a cubbyhole to bask in and tells me that a "Resident" will be in to see me shortly and then the mighty doctor. Well after cooling my heels in there for about 5 minutes I noticed a chart on the wall from Pfizer listing all the antiseizure meds and so I scoped it out and you know what every possible side effect from every one listed I have suffered from in fact it was right there- TOPOMAX- may cause kidney stones! Now I know where they came from! They had all the info for what they caused me before they administered the junk to me!
Well at about 10:45 the door slides open and in pops the "Resident". I was quite surprised as she was a very cute young Japanese girl wearing jeans and a bright red pair of old PF flyer tennis shoes! She had about 6 earrings in each ear even at the top of the ear etc. Well this was going to be interesting after my near homosexual experiences earlier in the day this was quite refreshing! She was very bright and cheerful and had more questions and I could have talked with her all day!
At about 11:00 in walked the mighty neurologist. Now mind you I have never watched a whole episode of the TV show Frazier but it comes on after the news here and there is an actor I gather that plays the part of fraziers father who has what I call one of those stupid looking fried egg hairdos, this is where the guy is bald on top and has a stupid looking fringe of hair around the base of the dome! Well he was very brusk and seemed to think that most of my question and concerns would be better directed to the Neurosurgeon who has been ignoring me for two years! He did mumble about the possibility of me coming back for an EEG? Sure why not, more smoke and mirrors and we can bill my insurance till the cows come home for this mumbo jumbo! Needless to say I was getting pissed and lucky for him he seemed to sense this and scurried off!
Well then it was time for the MRA fiasco. One of the sad things since my adventures began since I can no longer exercise my arms have turned to jello! No big deal right? It ain't until they try to find a vein to inject the contrast into and my arms were stabbed over and over and finally they got a nurse who was able to start an IV on the back of my hand! I walked out of there with tape and cottonballs all over each arm. The adventure continued on in to the afternoon culminating with my bone density scan which was another story in itself and I have pretty much decided that this is all I am really interested in as if I find out my bones are strong again I will just blow off the rest of this stuff annual MRAs and crap! It's all designed to mine your insurance I have decided, your well being and trying to learn from survivors is not an issue! I would have got more satisfaction from sitting on my porch with my dog for a half hour and it don't cost me nothing!
Update: 21 June 2004
Well I hope everybody had a pleasant Fathers day yesterday. It has been three weeks tomorrow that I had my bone density scan and the news was not good! IMPRESSION:
What does it all mean? It sucks is what it means! Here I have been led to believe for over a year that taking a weekly dose of Fosamax and taking 1200 mg a day of calcium the situation would improve- THEY LIED! It didn't as my bones continue to waste away!
Whats this got to do with my brain aneurysm? EVERYTHING! These problems did not arise till they started experimenting with me following my aneurysm as they try their best to destroy me in the name of medicine! Once again I will stress to this family to get a bone density scan if you had any type of steroid therapy following your aneurysm! I KNOW for a fact prior to my aneurysm my bones were VERY strong! I was racing motorcycles offroad at the time and the nature of the game is if you want to go fast you crash now and then, but I never broke any bones. In fact the last time I broke a bone was when broke my collarbone falling of a bike one night back in 1987. That was an alcohol related adventure on a very wicked street bike that would have broken much more on folks that were in lesser shape than I. In fact following the incident I just went home and didn't get around to going to the emergency room for an x-ray for a day and a half!
I have been very dysfunctional these past three weeks trying not to think about it as I do not think I can go through the horror of three months in bed and constant pain again. I have an appointment in one week with my GP and as much as I like the guy as a person he better have some answers as I am not going to live in fear for another year only to be told the new medication they now have me on didnt work either! I will try to be polite to all involved but none of this is my fault and somebody screwed up someplace and ruined my life! I do wish it was not so or it was the work of spacemen or my own stupidity then perhaps I could cope better but it is all a result of their fumbling! Who in their right mind goes to doctors just to get hurt?
This pretty much tears it for me as I have pretty much decided to focus my energy on trying to get them to fix the bone situation, never mind the brain stuff as their mucking around in there started all this in the first place and it will be a cold day in hell if I ever let them touch my head again! Trust me on this one! I was hoping I would have some good news to report for once but it just keeps getting more bizarre and if that isn't enough I am now battling the IRS to get money THEY owe me! Why do we get so lucky? For once I just wish I could meet someone nowadays who actually knew what they were doing!
Update: 9 July 2004
Well it is once again July so next month it will be 4 years since my head exploded. This past week was a very bad one as I was suffering from food poisoning after eating some spoiled roast pig at a graduation party. Trust me there is nothing worse than being disabled with the trots!
Well life just keeps rolling along and I think I finally got the mess with IRS cleared up and they owe me almost $7,000. Sent all the paperwork out last week via certified mail. What will I do with the money? Well a plan has been developing in my mind that I will just put it in the bank and sit on it in case I am ever hospitalized again as I intend to have things my way! I will get a cell phone and call out for escorts to come visit me and order pizzas and stuff! They also have plenty of outcall massage parlors in Honolulu so a daily rub and tug would be in order! I think this is a good plan as the next time I go in there I don't think I will be as lucky as I have been in the past. Three times is pushing your luck. But the place doesn't have to be so depressing and Im sure with a few bucks set aside you could liven the joint up! I will get even. Just imagine Rodney Dangerfield going in for surgery and you will get the general idea! LOL
Gives me something to look forward to! RRRRing! "Island fantasy Escorts" "Yeah I need you to send a couple of gals with a radio to dance to, to room 107 at Straub and tell em to pick up a six pack on the way!" My friend Red Dog always said living well was the best revenge and I do believe this is true.
Update: 17 July 2004
Well this last week wasn't pretty and the thought has been nagging at me all week to address those of you out there who are trying to cope with a loved one who has survived one of these things! How could you ever know? Just keep your eyes open and try to understand as my heart goes out to you as I do believe your job is a lot harder.
For 47 years I was hell on wheels never giving a thought to how things worked or why I even was alive and just lived life to the fullest! Trust me on this! Brain? well I made it a point to alter mine almost every night after I retired from the Navy, then BAM! Along comes Mr. Aneurysm and Im here to tell you that you HAVE no idea of how much you take things for granted! Hey we all do it up until my head exploded the only thing I had seen that really altered how I viewed life was the birth of my Son! That was amazing and very thought provoking. You women are amazing and to be able to do this! It is truly a gift it may not seem like it at times but trust me it is. Back to the brain thing.
Well for me I believe God made us. Hey it works for me. He may have made you from a monkey but I aint buying it especially since I have owned two monkeys in my life! The thing I will share with those of you trying to cope with your "NEW" loved one is that we are not sure what is really going on either. For example for almost four years now I have yet to get back to normal as far as taking a dump! Hey this is basic stuff here. But Mr. Brain controls everything and he was trashed so now what? The other night I awoke at 0330 in the morning and the hamburger I had eaten for dinner had rebuilt itself in my stomach it felt like and I had to get up and stare out the window at the sun coming up as Mr Brain controls the acids which digest your food! The list goes on and on.
I never thought that much about what a miracle the brain is, those of you who never had a brain trauma just take it for granted if your ear itches Mr. Brain sends the signal to Mr. hand and he scratches the dang thing! No problem but today my Mr. Brain wouldn't let my Mr. hand open a can of peanuts! This kind of stuff bums you out after awhile and is hard to understand! I just wish the powers that be would take an active interest in all of us who have managed to survive one of these things and follow up with us, at least annually, to see how we are doing and compile the data to be used regarding our situations in hopes of sparing folks the misery of wondering for months now why does my hand shake like a leaf when I try to use a tool?
We look the same but we are now, oh, so different. For example I can no longer watch a TV program that shows an animal getting hurt without it depressing me all day! Me a guy who used to hunt and spearfish every chance I got!
So just try to humor us for we really have no control over the situation unless you take us to Dr. Feelgood and he tanks us up on meds! I spent almost 8 months in La La Land and it aint for me! Anyway trust me when I tell you we really just dont know and are just trying to adapt to our new brains.
Update: 5 August 2004
Well folks today I have an update of a different sort, it will be four weeks ago Monday that I went into our county office to get my drivers license as it expires on my birthday next week. Well the woman who had been there for as long as I have been living here was told to retire due to having light fingers with the fees, so we have a woman come over from Maui two days a week to try to unscrew stuff as this is also where you pay for your trash and sewer, not just DMV stuff! It has been a real zoo! Well here comes the brain damaged one eyed dude with a cane and right away I am scruitenized and told I will need to get a doctors paper authorizing me to drive? Funny don't ever remember getting one when I was 14! What has this PC sue happy world come to?
Now I could see it if I walked in with a seeing eye dog! Ever wonder why your health insurance premiums are so high? well my health insurance got billed $90 for this worthless paper! And to top it off the lacky who was here was too spineless to make a decision and told me that she would have to take the paper back to her supervisor to make a decision and she would call me! Well this Tuesday rolls around and no phone call so I drive my wife to work in the pouring rain and return to the quagmire for a little one on one. May God help me to remain civil to these idiots as I stood in line for one hour with about 20 people in various pissed off states.
Once inside the office I was finally able to get a chair and she spies me and pipes up she will call her supervisor and call me. I just gritted my teeth and ask her if her supervisor was a qualified MD to override my doctors decision that I am fit to drive. Well I just got a blank look. Being the type of guy I am I came home and called the county office where she works in Maui and guess what her supervisor ain't even at work that day!
Well it was time for the chief to use the chain of command and I called her supervisor's supervisor, the Mayor and unloaded on these clowns! Well a few hours later my phone started ringing and finally four weeks later the fax came in allowing me to renew my drivers license today. But I will have to wait till next week as she went back to Maui at noon.
The point here once again is I never had any idea that folks with disabilities were treated so shabbily. DO NOT TAKE IT! Demand to see their boss! And if they suck keep on going up! Why is it nobody even bothered me when I was able bodied. LOL I remember two friends and I going and getting our drivers licenses drunk in Guam back in 1984! There was a bar that was near by that was more comfortable than their plastic chairs while waiting to take our road tests!
Update: 12 August 2004
Well I went yesterday to the continuing license saga. Once again I had to call the office as NOBODY contacts me, and ask the woman if she had everything? LOL Well I went over there before they opened so the line was only 6 people or so and she showed up and couldn't even meet my gaze. Kinda reminded me of my yellow Lab, Mickey, the time he took a dump on the rug! Well all I had to do was sign a paper give em $10 and get my picture took and my thumbprint scanned. Why couldnt we have done this over four weeks ago? So stay on their case don't let them push you around
The other thing that was totally asinine is that I now have to get my license re-newed every two years! LOL I plan on calling my health insurance provider and letting them know they will be getting popped for $90 every two years for the rest of my life and I think it is only right the rest of the state gets doctors clearances to drive every two years as judging from the amount of fat people around they might have a heart attack while munching a Big Mac and talking on their cell phone while on the road!
Update: 28 August 2004
Well folks I sit here this morning thinking four years ago the 28th of August was a Monday morning and my life would change forever on that day, I was VERY lucky as my friend found me conked out and took me to our little ER, I was even luckier at the time as we had a new doctor on our island and he knew what the deal was, had the previous quack been there I wouldnt be writing this! Trust me I KNOW!
Anyway just got done writing another one of you on how different my life now is, but you know what? Despite all the follow on torture I have experienced it has all been worth it and if somebody would have told me 4 years ago that I would have more money in the bank than any time in my life and would attend church every Sunday and go to sleep at 9 o'clock every night I would have laughed at them!
Do try your very best to go on no matter what! This is what we are here for, somedays are bad but I am beginning to find more good ones and so far the only real bane to my existence in this new life has been doctors. Anyway you folks all take care and take FULL advantage of the fact you got a second chance on life and do take the time to make it a better one than the first one.
Update: 4 September 2004
Well this is not an update but a general warning of sorts and you can take it for what its worth. Was interested to read Bills comments on PTSD and until I had my aneurysm I was unaware that I had been suffering from it for over 25 years, but at the time my emotional well being was first assaulted I was young enough to adapt a whole new lifestyle to cope with my new found disgust with my "FELLOW" Americans.
Upon returning to the USA in 1972 my treatment as a service member back then really bummed me out so I took matters into my own hands and quit living in the continental US in 1977 as I had nothing in common with all of you and lived in Japan, The Philippines, Guam and Hawaii as the place is loaded with brown people who were more or less supporting our military, well for years I just immersed myself in my work and when I got ready to retire from the Navy, now what? I knew I couldnt fit in in suburban America after all the few times I visited throughout the years nobody I knew could knock back a case of beer and dive for lobster all day and still function the next so I retired on a small island among mostly new immigrants to lick my wounds, and it wasnt until I had my aneurysm that I had time to lay back and ponder how I had become so anti social etc. Believe me I did not start out life this way, well the Aneurysm trumped being a Vietnam Vet and some more pondering is now in order.
I am no skull mechanic but I can tell you that sooner or later PTSD will come calling just like the depression and these are the things that you family and friends will have to cope with, and just why is it I should have to attend therapy to try to help me? Back when I returned home I was only 18 so I cut my loses and went on my own merry way, kind of hard to do as a 47 year old cripple though, this was back in the days before Dr. Phil and Oprah so I just tried to make the best out of what was available and to me some 32 years later this is still the best advice I can offer only been to a psych once when the Navy tried to frame me as an alcoholic and I ran that sucker off, he wanted to interview me? HE WILL NEVER KNOW nor will anybody else what makes me tick. I think all these so called experts are all barking up the wrong tree and need to work with us survivors to come up with a playbook for family and friends so they will know what to expect as they are the ones to me who need the counseling and therapy why should I have to try and mold myself back into something I once was to please others?
PTSD it will come but will you and your loved ones be ready?
Update: 26 November 2004
Well it is our national day of thanks. I don't really know how much longer it will be around if the trends continue. Maybe next year we will have a National pissed off day where we can go down to our local sports arena and box our NBA team?
I have a lot to be thankful for this year. Even though the health situation doesn't seem to be improving at least I was alive and able to see my Sons wedding. It was a real blessing to me knowing that my wife and him are happy makes it easier for me to go if I have to. And to all of you out there take the time to count your blessings. I know at times one feels bummed about all of this but if you are reading this and are an aneurysm survivor you are blessed!
Update: 19 December 2004
Howzit from Hawaii to my family friends? Right now its a chilly 65 degrees here in Lanai city, wish it was 80! LOL The sun is out so there is still hope as I have some shopping to do this afternoon.
Well so far this year has been looking up except for health but I can't let that get me down. And for all of you out there suffering stay strong.
I know right now its PC to Pooh Pooh Christmas but not this boy no way. And me, I truly do believe, no ifs, ands, or buts about it. On the other hand the year has been a good one to me as my man won and Scott Peterson was found guilty so things are starting to perk up. Anyway Merry Christmas and a Happy New Year to all.
Update: 2 May 2005
Well here it is coming up on five years and I am in the process of working on getting revenge against some of the people who have done me wrong. I know I know, it is better to forgive and I can find it in my heart to forgive but on a daily basis I cannot forget that it was people's failure to listen to me that put me in the situation. I have now dedicated my life to making them aware of just how wrong they were and have come to learn the only way to get these folks attention is to hit them in the wallet! After a look at the following figures they can well afford it. (A note to family members: I was in ICU for six weeks but how much does it cost to have some one dump a can of ensure in me everyday?)
My aneurysms were coiled on the eve of 28 Aug 2000. Everything following that was just wait and see no special operations except to repair my eye, then my tumor, then my back all as a result of the aneurysm? Trust me they will extort as much as they can. And since I am blessed with good insurance, while I was in a coma they were in a feeding frenzy. I was in the coma for six weeks during the first billing cycle! I can tell you that since coming home on the 23 of December the amounts have decreased. Not really from anything they did but try to repair damage THEY inflicted. But home is the best place to be; trust me the figures prove it.
Yearly recap summery of claims...
August 1,2000 - December 31, 2000 - Total charge
of claims submitted, $690,917.74
January 1,2001- December 31, 2001 - Total charge of claims submitted, $161,596.97
January 1, 2002 - December 31, 2002 - Total charge of claims submitted, $109,730.11
January 1, 2003- December 31, 2003 - Total charge of claims submitted, $89,097.07
January 1, 2004 - December 31, 2004 - Total charge of claims submitted, $10,923.36
January 1 2005 - April 20, 2005 - estimate of claims, $211.24
As you can see just by going home on the 23 of December in 2000 cut 500,000 off the bill as I was really only in surgery the night my aneurysms were coiled and when they tried to repair my eye and stomach that they messed up. The rest is just for minimum care as I can assure you they never even brushed my teeth from January 2001 to December 2001. I was home alone and for awhile till I forced them to remove that stupid feeding tube a public health nurse would come by once a day and top me off with a can of bird puke. By the way a they billed my insurance $10,000 for a few cases of that trash?
These figures do not include the separate bills I received from lying doctors and hospitals who were not content to rob my insurance but felt justified trying to reach into my pocket for such marvels as a Psych eval while I was in a coma? So glad I survived so I was able to call these idiots on the phone and tell them to get bent! I WILL NOT PAY! Take me to court! I demand to go! This is one "Brain Damaged" Dude who will humble their greedy butts!
The lesson here folks, especially family members who are assisting a loved one through this, double check every thing they send you as in my mind the services I received at best would only be worth half the amount billed in the first 5 months of the ordeal, or for the whole 5 year period. But hey I'm alive so I guess this doesn't give me the right to complain? This is what they are banking on and more of us who are able need to point out how fraudulent the system is! I KNOW how hard I had to work to get the benefits I have and just because I have them does not give them a right to abuse them.
Here is another example of what I am talking about, From October 2000 till December 2000 I was in a death camp known as a Re-hab hospital where a female doctor billed my insurance for $2,446.08 for what I have no idea. I can recall my only dealings with her was to say hi to her now and then as I remember her name tag as I would pass her. Unless she was fooling around with me at night she never even touched me as far as I know? This to me is an outrage and if you are going to rip off my health plan for almost $3,000 just to say Hi something is VERY wrong with the system! Trust me on this!
Anyway if you only get one thing from this update that is to BEWARE these folks in the U.S. are out to rip off your health plan! Check everything leave no stone unturned.
Update: 16 June 2005
Well last night about 9:00 my phone rings and it is my GP here on Lanai and he has the results of my previous weeks bone density scan. According to him the latest round of junk I have been taking for the last year appears to be working! Man that is good news I feel better than Michael Jackson! BEAT IT! He says I now have the bone density of a 53 year old man in my spine which is almost spot on as I will be 52 in August!
This is the best news I have gotten in over two years! I asked him how soon I would be able to start racing motorcycles again! Today I will go for a long walk to start building my stamina!, Got to get some free weights so the next time I go to town to get an MRI I can whip some butt if need be! They better stand by!
I was so excited I forgot to ask him if I keep taking this stuff will my bones return to 20 year old strength? If so I can really get nuts. I know where I can get a Kawasaki 1000 Ninja engine on this island and have always wanted to build a pro stock Drag Bike! Run that sucker on Nitrous Oxide!
The news couldn't come at a better time as my new business is just starting out and it looks like our first client still hasn't paid up so I like being able to toss folks around if need be!
Anyway if you are on some sort of regime don't give up! Keep trying and complaining until they get it right! Hey if they can castrate a guy and he goes out and wins 6 Tour de France they oughtta be able to do something for us?
Update: 21 August 2005
Well next week it will be 5 years since my head exploded, whats new ? Well the year has been looking up as I was told I now have the skeleton of a 53 year old man and this encouraged me enough to buy a Honda Ruckas scooter to drive. Once my bone strength gets to be that of a 25 year old man I will buy a Harley, I guess.
I have located an Opthomologist who seems to think he can repair the damage to my left eye and restore the vision, so like I have said before don't ever give up! The road back is a long one, trust me on this, but with an optomistic outlook and a heart that can forgive all the dummies in the world it can be done.
My new business is doing well and thats what we have to do if society won't accomodate us we have to figure out a way to capitalize on the situation! This is the American way!
Update: 30 August 2005
(Written on 21 August 2005)
In 7 days it will be my 5th birthday since conking out in 2000. Life is good not what I had expected but good as I fool around trying to get back to where I once was. Right now I am in the process of trying to get a Honda scooter to drive around! They make a really nice one that doesnt look like a toaster and I guess since my bones are strong again I might as well go for it.
I was scheduled today to undergo another surgery for my eye which may restore the vision but the Doc had a family emergency so I had to CNX he should be back next week and we will re-schedule I am keeping my fingers crossed the procedure works as it will make a major impact on the quality of my life! Slowly but surely things are looking up remember my advice never give up!
Addendum to update: 30 August 2005
(Written on 30 August 2005)
Well the story never ends? I had just submitted an update when on the 21st of August I developed a strange pain in my side and went to the ER. For some unkown reason the quack put one of those stupid clips on my finger to monitor my blood oxygen content? Since he don't know I have basically been in invalid the past 5 years the oxygen level should be low as I can't move around much so he orders a chest x-ray? Well he gets the x-ray and starts freaking out telling me that I have an embolism etc? So the air ambulance is called and the next thing you know I am on my way to Honolulu.
Well the EMTS on the flight were fooling around with my stuff and pulled out my x-ray and held it up to the window. Well that big white spot on my lung was the cement in my spine from the Kyphoplasty I had had a couple years back?
We get to Honolulu and another meat wagon hauls me to the Straub hospital ER where a new quack takes over. In order to save face they send me upstairs to have an ultrasound done of the painful site in my side. Well the clown doing the exam wouldnt let me see the screen nor tell me what he saw prior to chumming it up with the quack and it seems my gall bladder was full of stones. Right away some little Chinese girl appears who claims to be a doctor and says my Gall bladder needs to come out? OK I'll bite I guess and she prattled on about how 4 small incisions will be made blah blah and so on. In my usual trusting manner I said do it!
The next morning at 7:00 they come get me and wheel me into the OR and I am feeling no pain. The next thing I know I wake up in an office space with folks going all directions and my good eye picked out the clock and it was after 2:00pm! Here we go again I thought. God watches over them fools cause I was too damn weak to jump off the gurney and destroy something!
The next day I wake up in extrme pain and the sing song girl tells me that, "Due to my strange anotomy they had a hard time?" This tore it for me and I told her I didn't like being lied to. She then got all huffy and said the risks were explained to me? LOL I THINK not! She never explained that there was a chance that the idiots who were about to perform the surgery didn't know what they were doing and couldn't find some duct and made a mess out of me.
I now have an 18 inch scar on my right side where they were digging around and I guess at one point had to do an X-ray? May God help us all. I refuse to ever go back to this hospital and I am trying to figure out my legal options as this stuff has got to end.
The only positive thing about the week of pain and anger was a guy finally fixed my left eye after 3 years of lies. Hope you guys all have better luck than me. I try to be nice but this was just too much.
Update: 26 October 2005
After getting up this A.M. after a month of pain that looks like it is finally leaving I thought I would share a few thoughts. I have come to realize that unless you have a broken bone or need stitches doctors aren't good for much else and when they start rooting around in your head all bets are off.
The suffering I have been through the past 5 years was the result of "PRACTICING" medicine and about the best advice I can give any of you out there if you are seeing a doctor and they don't actually give you their undivided attention, get up and LEAVE! I can't be more sincere. These guys whether they like it or not are working to provide a SERVICE and in business the customer is always right.
This last bout has been bad. After a failed laproscopy surgery, the idiots almost cut me in half trying to remove my gall bladder. And nobody thought to tell me to stay in bed and my lower back muscles gave out! Oh man it was bad and it wasn't like I'm lifting things. Just my body weight did it. In fact the wife had to use another week of family leave to care for me,
I have come to the point in my life now that if I have another aneurysm so be it and don't bother. I will see you all on the other side someday. I have been there done that and nobody learns nothing along the way. This is why I have not gone for an annual MRI, Anyway there comes a time in your life when enough is enough and my fun meter has finally been pegged out!
Update: 28 January 2006
Well its been a while but I am still steaming along and have a question for all of you who have survived a brain aneurysm. Since 2000 I have now had only two dreams that I remember. LOL One was about motorcycles and the other was about sex. Maybe these are the only two subjects my brain acknowledges anymore. But seriously before my BA I used to have all sorts of dreams but now I just sleep like the dead and the dreams are no longer there except for the 2 I mentioned. To me this is strange and I was wondering if others had noticed this?
Update: 13 February 2006
Howzit? Well I have been toying with this for a few weeks but after some e-mails to other family members I am truly amazed about the lack of counseling there is for folks about to undergo ANY type of Brain Surgery. And if you disagree with my following observations I understand but do mail me your reasons.
Way back in 1977 I had a wild friend a retired Navy Cook who lived in the Philippines. We loved this guy. He was a little onery Irishman who had the biggest set of you know what. He was so full of fun and life never a dull moment around this guy. Well one day at our favorite beachside watering hole I strode up thirsty and noticed him with the other old boys gathered around him talking kind of quieter than usual. I thought it odd for him to be there so late in the day so I pulled up a stool alongside and listened to the story of woe.
It seems John had been having mystery headaches and he would bitch about them from time to time. We would tease him telling him to buy a better brand of whiskey next time. But he was pretty private about his personal life as he had re-married and was making babies again. Well I gathered he had been to the doctor so they set him up with an appointment for some type of scan at the hospital at the former Clark Airforce Base, about a 2 hour drive away. He had gone that morning and was told he had a Brain Tumor.
Now being the wise acre little guy he was he just looked at the Air Force doctor and told him, "Well thats just effin dandy and now if you don't mind sir tell your goons ta give me back my car keys and cigarettes and I'll be out of here!" LOL
Well we were worried about the little guy as everybody loved him but he was admant and told me he would never let them Monkeys cut open his head! Well lets fast forward to now that I have a computer and one of the fun things to do is search for old friends. It seems that John lived another 19 years and died at age 67 He lived a pretty normal life and just dropped dead one day. In retrospect, I sometimes wish I had had the same resolve just to blow em off when my neurosurgeon told me about my tumor.
I should have asked WHEN will it kill me? The thing was very slow growing. And since my aneurysms were coiled I had never undergone brain surgery. And correct me if I am wrong, but in my opinion once some fool cuts your head open you are never gonna be the same. Don't know why this is but to me it is a stone cold fact that should in no way be ignored or glossed over instead of trying to find a cure and what causes these things. I would think that by now their would be sufficient data to help individuals in their decision making process.
In my case I told the Neuro to leave my tumor alone. But he said it would kill me. Since I was less than 1 year post coma, and on drugs, my thoughts were not up to speed. So I didnt ask the "WHEN" question. Knowing what I know now I would have never agreed to the surgery and avoided the hell I have been through the past 5 years.
To me if one is in their late 40s, as so many of us are when these things start popping up, it is time to evaluate EVERY aspect. Its not like we are in the running for setting Olympic records and such but just want to live a normal comfortable life. And it just seems to me that most of the folks are completely unaware of post brain surgery problems. And we who have survived such things have the knowledge.
For example in 2001 I underwent a Gamma knife procedure and to date NOBODY has followed up I also now have a shunt in my head and to date NOBODY has ever explained it to me. I have heard they require maintenance? But for some reason they dont want to know the results of all their fine work We should just shut up and be happy we are alive. I could expect this if the treatments and surgeries cost $2.50 but to date they have robbed my insurance of well over a million dollars, and it keeps going. And I still cant get any answers.
Those of you who are just getting on this bus be very careful and check this site out thouroghly as the REAL stories are here not some guys idea of what it may be like. Leave no stone unturned as we have to make this work to our advantage no matter what they think.
Update: 17 April 2006
Whenever possible people who survive trauma should try to get together to celebrate life. I have placed a photograph of a Lanai City Picnic on my homepage. It was only fitting that on the day between Easter and good Friday such an event could take place and for us to get together and trade war stories about peg tubes and stupid doctors was very good therapy - trust me on this.
I have been pestering Lui to post a narrative here as he had his burst in 1999 so he is the Senior member, I came next in 2000 with mine then if my memory serves me correct Lyndy had her's in 2001 and Tori 2005, anyway we all had a great time and were able to draw strength from one another.
It was a special pleasure to meet Tori's husband John; Tori is in good hands there. As a retired Navy CPO I know a good officer when I see one and on top of that he is a great husband and father.
I'm extra blessed having Lyndy here at our home for 10 days as she really made my wife realize that her husband hasn't been pulling her leg as she and Lyndy talk of things. I think the fact of listening to another persons difficulties lends verification that I am not faking it when watching football while she mows the lawn.
Anyway for those of you who are able I would highly recommend trying to get together with other survivors whenever possible it is worth its weight in gold as far as I am concerned. You are not alone.
Update: 4 August 2006
It's August again and soon it will be 6 years of a new life. This past couple of weeks have been kind of different. A couple of weeks ago my wife came home from work excited to tell me she had met a guest at the Hotel, where she works, who is an aneurysm survivor. Well this is news to me so I had to get in touch with her, and we were able to meet for lunch.
It was so nice to meet she and her husband. I hope she will post here. Her name is Linda Downing and to date she had not met another victim of these things. Her husband is a nice guy who, like my wife, was kind of mystified by it all the thing I have been noticing.
I have been blessed so far to meet 4 aneurysm survivors. We all seem to have a lot of common interests and really seem to enjoy our lives no matter what it brings. This is not a slight to those who didn't make it but just an amazing indicator to me that having passed through this trial you have what it takes. I believe it is more about the persons spirit versus the medical issues. By rights I'm not even supposed to be alive and to date NOBODY can fathom how my thoughts and memories are intact.
The other unusual thing I noticed is that I have only met 3 female aneurysm survivors and they are all blonde thus shattering the blonde myth. They pulled through and in the case of two of them are still working.
This year will be great if I pass the 28th without winding up in the ER. But once again if at all possible do try to meet with others as it will really help you and your family members to understand you are not a loony.
Update: 28 August 2006
Well lets see tomorrow the good Lord willing and the creek don't rise will be the day six years ago my life as I knew it ended. I think the best thing so far is that this is the first year that I didn't have to go under the knife for something related to all this mess, keeping my fingers crossed as there are still 15 hours left.
Anyway the thing that comes to mind foremost is the alarming lack of service in this country today and I feel for the folks who are just starting to deal with all this as its all done with smoke and mirrors and good luck speaking to a human being on a phone anymore. Its sad but I have one bright spot to date as my new primary care doctor is really good about following up and I'm lucky, lucky to have J-Lo as a doctor. She gets things done despite the staff and I couldnt ask for more in fact you as a survivor will need a doctor who is willing to listen to you and try to help this is so important and rare nowadays. I hope I dont burn her out.
To date many questions still go unanswered and I hope through time she can get to the bottom of some of them. But I wonder how many aneurysm survivors she will work with in her career. It's kind of like learning to be a typewriter repairman today for all the good it will do her in the future. If we all had a central point to line up at where doctors were swamped with us something might be done. But folks are still dying from cancer so I guess we will have to be content with our mystery pains and shortcomings until they cure AIDs or Cancer.
Anyway once again try to let people know how the system is and try to do your best no matter what. Feel free to use my favorite retort to crappy service - "I may be brain damaged, but I'm not stupid"
Update: 10 November 2006
Well I had an appointment with my fine doctor J-Lo yesterday as it had been two weeks to the day since my MRI of my brain and nobody from the VA has contacted me. The report sent to Dr. Lo said no change since the last MRI in 2003. What am I supposed to gather from that? I guess the hunk of tumor is still there but what about all the other stuff? Why is it now sore around my shunt when I touch it? Why do I now feel dizzy when I lay down at night? And the list goes on. She is a fine doctor but this stuff I'm afraid is out of her league and she is really good about going to bat for me to get refferals, but I dont know who I should see? The neurologist I saw was a quack I feel as he wanted to do EKGs on me?
Update: 12 November 2006
This is sort of a question.
As you may have noted, I have not had many dreams in the past 6 years? I also have not had any seizures, I know off? Is shivering like one is cold a type of seizure?
Last night was very strange. After going to bed at about 12, I had fallen asleep earlier watching 20/20, I awoke at around 1:30 in the morning shivering cold. Although it is not cold, and I was under blankets, the shivering awoke my wife. Strangely, I remember making the comment "Death passed me by".
Last week my mother had sent me a copy of the book, "Flags of our Fathers", which I would highly recommend that all Americans read, and I was dreaming at the time I awoke I was curled on an overcast beach someplace and was so cold? Trust me I was disoriented when I awoke as it was so real.
As today is Veterans day these things have been on my mind a lot as they are every year, everyday in fact, if you were in as long as I was, I myself have landed on Iwo Jima in the late 80s on an overcast day such as I was dreaming about and since we were in a small twin engine Piper we were low and slow and even to this day the waters surrounding the place are choked with tanks and other things? Pretty spooky.
There also is Mt. Surabachi, my father was their on the USS Tazwell landing Marines and he had told me that during the Naval bombardment of the place one of the shells hit that mountain and a cloud of huge bats came out during the day as the islands around Japan were full of Flying Foxes fruit bats unkown to most.
Anyway It was a strange night and I'm hoping it wasn't some sort of seizure activity as my mind was wandering and I got back to sleep about 2pm when I stopped shaking.
For all of you out there who have family were or are in the military may God bless you all it is popular today to forget I guess but I never will as I often think of the good people I have known and still do I for one will never forget. Well I better get moving its time to go try to enlist members in our local Veterans organization here in our park so I guess in a way I will always still serve.
Update: 16 December 2006
Aloha from the state that kicked Washington states butt this week. Well once again its that time off year and I for one couldn't be more happy. I got to spend a week with my 1st Grandson, Richard. I never thought I would see the day. But for those of you who are just coming to grips with these things take heart it does get better, if you let it. Just remember to focus on your needs instead of your wants this coming year and you will most likely find by doing what you need to do you will get what you want. Funny how that works out. And so to everybody have a Merry Christmas and a Happy New Year.
Update: 20 December 2006
As I have mentioned in the past I really no longer dream that I am aware of. This doesnt bother me too much. But sometimes I awake at night, due to some reason unkown to me, and I find this disorienting and somewhat strange as I dont know if it is a dream or what? Well it is kinda spooky to me in some ways and this is the reason I need a cat which sleeps between my wife and I. It is a constant source of reassurance as I know they don't allow pets in the hospital and just petting him lets me know I'm where I need to be. I would pet the wife but she doesn't understand anymore. But it really bugs me now when I wake up in the middle of the night as I still don't trust my brain and wonder whats going on. If you have the same problem get a cat they work rather well.
Update: 26 April 2007
I was happy to read Heidi's update as this is the way I pretty much see it. Also as we are all different whether we like it or not and what we lost affects each of us to varying degrees. Why I know plenty of lazy buggers on this island who would pay to be in my shoes getting paid to do nothing? This has been the worst part of it all since I am not horribly disfigured or missing limbs people assume I am OK and they will never know how much I LOST. For example it pains me to walk into my carport and see my workbench and thousands of dollars in tools covered in dust rusting away? I probably should sell it all but keep hoping one day I will wake up and the nightmare will be over.
People who I deal with in the VA have no idea of what I lost and have no idea of what it was like to slide down the face of a 10 foot wave on a bright sunny morning looking at the bottom in the clear waters as fish scattered. Or the thrill off driving a high speed dirt bike over a rise as it gets weightless and you fly through the air for 20 or 30 feet. Or diving underwater and catching lobsters by the dozen. They have no clear idea of what it was like to be me and for some Bozo to try to assign an index to it is insane.
I get so depressed trying to get these people to even begin to visualize how much I have lost as this is why I live on this remote island in the first place as I loved my life and was the happiest I could ever imagine when the bottom fell out? Can they even begin to imagine that I could hold my breath for 2 minutes no problem and swim to 50 feet under water? No way as their lives mosly consisted of punching a clock someplace and maybe going watersking once or twice a year? They never used to get up at 4 in the morning to venture into the islands mountains to shoot deer on our monthly damage control hunts.
I have tried my best to find new things to keep me occupied but being as I am not brain dead my mind often wanders back to the good old days. And I am not bragging but just stating the facts as I lived a very full and active life and to be reduced to a cripple is a hard row to hoe. I can do it I suppose but folks really have no idea of the toll it takes. Coming to grips with ones new shortcomings is hard and the trick is to convince yourself its all good so you dont get caught up in the quagmire of depression.
Update: 10 May 2007
After fuming this AM (May 9) before going to bed over "SIDE EFFECTS" I figured I would write this when I woke up.
Beware those of you who are going through this as it is my opinion that NOBODY really knows what to do with us. Why just last week I was diagnosed as Pre-Diabetic, another hurdle as the result of this crap. I have no history of this in my family that I am aware of. It is brought on by the inabilty to exercise due to the osteoporosis which they caused. I only eat 1 meal a day at most and it goes right to my middle. When I first came home in December 2000 I weighed less than 100 pounds and there is a picture at the top of the page that proves it. I now weigh 247 pounds and I dont like it but what can I do? LOL I just started getting my sense of taste back and am starting to feel hunger again after all these years only to be told this.
Of more interest however is a tale of how doctors are and it is my hope that since Dr. Maples said some come to our site they will read this and take steps to correct such behavior.
I'm in an unusual sitiuation I'd say due to the fact I live on a small island with only a clinic and 2 doctors now and have been blessed that the 2 GP's I have seen here listen to me and are genuinely trying to help me. And this site has been valuable as who to ask her to get a refferal to see, as its all up to me. Well believe it or not it was I that asked my previous Doc here, who saved my life that day,, to get me an appointment with a neurologist. That experience is in my narrative and was a waste of my time trust me. The Neurosurgeon that first saw me now ignores me as I feel that I am living proof of just how wrong he was.
Anyway I am still all Bobo after dying almost 3 times in the past going on 7 years and thought what about a 2nd opinion. I'm runing out of options here so I asked my current GP to get me a referal for a neurologist on Maui. I refuse to see anybody in the neurology department of our hospital that manages our clinic. They caused all the problems. So on Febuary 5th 2007 I traveled to the island of Maui to see a Neurologist. Well yesterday I get a statement from my health insurance showing this guy was paid $231.55 by them for nothing as to date I have heard nothing from the guy? His exam consisted of him listening to me tell him what was wrong with me and his saying he would check my records?
This bugger better get a report off to my doctor here quick as I am getting ready to take him down legally. It will be my primary mission and since I now have the time and resources it won't be plesant. I am the type of guy who can accept, "We don't know" for an answer but the last thing you want to do is blow smoke up my ass and lie to me. If there are any doctors reading this trust me I ALWAYS do my homework and am smarter than most doctors even though I only have about a year of college and have come back from the dead 3 times. I have vowed that it is your job to provide service and may God help you if you try to short change me.
Update: 3 June 2007
My wife is worried about me again and is dreading flying with me to my next appointment. She cant understand that I KNOW these people are lying to me and wants to hide when I call them on it and get in their face. Just this morning since she has met other aneurysm survivors she was saying it must be the fact I was in a coma that I have all these problems. She has NO idea that most of the problems I suffer from today were NOT the result of an aneurysm but the fumblings of ignorant doctors who REFUSED to listen to me the patient. The aneurysm didn't cause my Osteoporosis they did! Tersons syndrome did not detach the retinea in my left eye, they did and the list goes on.
I have learned not to take ANY MORE mumbo jumbo from these folks as I now have done my homework prior to any appointment and will get up out of my seat and get in their face if I have to and this scares her as to her all doctors are Gods. Sometimes I just wish I had been sent home the day after I awoke from my coma. I KNOW I would be much better off than receiving radiation they zapped my head with in 2002. That's when it really got bad, but you know what? To date NOBODY has followed up and why should they? They got paid.
I still have the stupid shunt in my head and if it hadn't been for my telling them off I would still be tube fed and wearing a Doo Doo bag? She was told on that day almost 7 years ago that there was a 25% chance I would survive and that I would be a basket case if I did. I'm so glad my Son was there as they were trying to make her learn to change my clostomy bag when my Son stepped in and told em NO way and the idiots finally removed it.
Update: 19 July 2007
Well its getting close to August so its time for an annual update as when the time rolls around to 7 years I will be pretty busy here. My Mother my Son and his wife and my Grandson will be coming for a visit so I better get my thoughts down now.
This past year has been pretty good. I wasn't sent to the hospital for some new ailment but I did get a bit of a scare. Starting in April, or so, I was diagnosed by my Endocrinologist as Pre Diabetic? Whoa Homey don't need no Die Beat ass on top of everything else. At the time I weighed 257 pounds, I believe, and it was all in my tool shed as I'm 6'2". But I got a book called the "Ab's Diet" and started trying to eat good stuff for my one meal a day which just goes to my middle due to immobility. Well I now eat lots of Granola and apples and dried fruit and now am able to walk a 1/2 mile every night and the doctor told me Tuesday my numbers are good. She is sending the results to the Endocrinologist so I hope he takes me off the Metformin 3x a day.
I also lowered my dose of daily BP medicine to 5 mg versus the 20 I started out with. I now weigh 234 pounds. I would like to get down to 200 and that is still 30 to 40 pounds over my pre aneurysm weight but hey us old guys aint supposed to be cut? Also I have been getting a shot of testosterone every two weeks for 24 weeks. It is a slow process but I do seem to have more energy. But one has to look back to see the difference as I now seem to accomplish more. I haven't experienced Roid Rage yet. Then again I dont like to roll around on the floor with other fat boys and my son is not a Dwarf? Anyway the point is NEVER give up - always keep trying.
I also found someone who thinks they can repair the vision in my left eye depending on the thickness of my Cornea. I hope this comes to pass as it will be an immense improvement in the quality of my life. I'm still battling the clowns at the VA who still haven't learned to read. I'm sure things will go my way as they have in the past. It always amuses me that they think people would be silly enough to go after benefits they aren't entitled to. Guess this is standard operating procedure in todays world of slackers and all it does is hurt honest people like me in the long run. If you gather anything from this update it should be and once again I say NEVER give up! Keep trying leave no stone unturned your well being depends on you and you only. The Doctors don't care for the most part so take steps to educate yourself and your family as to what it is your trying to do and do it. And if your lucky like me and have a good GP and good insurance they will help you.
Update: 28 August 2007
Well today is the day that will live in infamy in our house. It was on this day 7 years ago that my life as I knew it ended. I thought I would try to jot down some feelings to try and help others navigate this dogs breakfast we have been blessed with.
Another event passed by largely unnoticed by the rest of the world on Sunday night when a 54 year old sailor walked his 1/2 mile course without a walker with only his trusty cane. I had been on the phone earlier that evening with a friend of mine whose father is also a stroke survivor but like many in our age group he seems to have given up and is content on being messed up and a burden to his wife and son. This is common, I have found, as we tend to believe doctors as to our fate? If my family had listened to these guys I wouldn't be here period is the point I'm trying to make. I do believe each and every one of us have the ability to get better if we don't give up. Why just last night I was looking at new diving equipment on line as I KNOW I will get back in the ocean one day.
Like I always say life is about change. For example last night was the first night in my 54 years I ever ate half a hamburger? A hamburger cut in half? Well I don't want diabetes so I now don't eat like I used to and have eaten more fruit in the past 6 months than my entire life?
We often just get stuck in a rut and go on thinking there is nothing we can do and in my mind I do believe one of the reasons I have been blessed is that I don't have access to the skilled medical professionals to "REHABILITATE" me. For the most part it has been me alone as when I first got back my wife would be at work all day. Being wheelchair boy gets old so I had to try every waking moment as my cat wouldn't bring me snacks and answer the phone.
Anyway I was trying to explain it to my friend about her father and how I was now walking a half mile everynight with a walker. But soon I figured I would ditch the walker. But gnawing at the back of my mind was, WHEN will I ditch the walker. Well I thought to myself, now, and went out and did it. It sure felt good, a "one small step for man one large step for mankind" moment and I do really believe each and every one of us has these capabilites if we keep going.
No it isn't easy and many will try to discourage you just as they must have Columbus. But I look back to where I was 6 years ago and can't complain. And that's the key accepting the fact that you are now different and figuring out what to do about it, and doing it. I make no bones, if I had listened to doctors I don't think I would be doing the things I do today. Luckily my latest MRI for kidney damage came back good no damage. I'm still waiting my latest bone density results if that has improved the diving gear will go on order. DO NOT EVER GIVE UP!
Update: 3 October 2007
I figured I should send this in to add before the ravages of time dim my thoughts.
Lately it seems more and more people are joining who have an aneurysm that has not burst and to me this is a good thing and it takes me back to my craniotomy. Unlike most my aneurysm burst and I had mine coiled and was in a six week coma but at that point my skull was still intact. The Neurosurgeon told me after looking at My MRIs that I had a brain tumor. I was so messed up I let him talk me into removing it? BIG MISTAKE I feel, sure it may have killed me but WHEN? So in less than a year after my aneurysm I reported for brain surgery. The following addition is true and may help others on what not to do when dealing with brain surgery.
First of all find out as much as you can about your condition and what the odds are regarding recovery etc. Second Know your Hospital this is a hard one but trust me all hospitals are not equal. I only found this out after being a patient at almost EVERY one in our state. I live on a remote island and so for me to get this brain surgery done they wanted me to report at 6:30 in the morning. Nice plan except we have no flights from here at that time. Since I'm on an island I can't drive there so I ask to be admitted to the Hospital the night before? NO WAY they say they aren't running a Hotel? Keep this in mind for those of you who live in rural areas?
These people have no mercy and DO NOT want to accommodate patients. So I was pissed as I would have to fly over the day before and spend the night someplace and get up at 4 in the morning? Well since I am very familiar with the area where the Hospital is located. This started one of the running battles with my wife. As far as hospitals and Hotels are concerned I'm the type of guy who think they both suck and across the street from the Hospital in Honolulu is a Cemetery? LOL I was just going to fly over and carry one of my Mexican Blankets and sleep in the Graveyard that night.
My wife wouldn't hear of it so I had to make a reservation at a local dive that cost me $65 and it is in a shady area of town which I knew in my prior life quite well. Full of Hostess bars that don't close till 4 in the morning. They are lucky I cleaned up my act following coming back to life as I would have showed up at that hospital with a couple of Korean hostess at 6 after drinking till closing time at 4 and lay down and gone to sleep they could of saved a bunch on the anaesthetic.
Well I show up at admissions with a paper bag with a tooth brush and a stick of deodorant and checked in. The nurse is puzzled looking around for family? Anyway they make me get naked? And put on a paper gown and wheel me into a room and give me the juice? Next thing I'm aware of is I'm in some sort of room and it must have startled me as the last time this had happened I had been out 6 weeks and some chirpy nurse pipes up "Oh Mr. Dickensheet your awake! Do you know what time it is?" Nothing frosts m worse than inane stuff like this. It gets better...
She then goes on to tell me my Surgery lasted 9 hours which made my blood run cold but I did feel real good for a change; that morphine is good stuff! They put me in a room after I passed back out as I remember coming to in a room with a window and the sun coming up and the pain in my skull was BAD. I lay there zoning in and out. Some hours later I came to to see outside my window a boxing ring with a large Gecko in it dancing around? LOL I really thought I had lost it!
Then I saw some goofy kid run past my room so I hit the buzzer and a nurse came in and explained I hadn't gone crazy they were having some sort of children's day at the Hospital? Call me old fashioned but when I was a kid you couldn't get me within a mile of a hospital and in fact if you were below 10 years of age they wouldn't even let you in to visit. But all that day noisy ass kids were running up and down the hall in front of my room? Well I just kept hitting the buzzer and getting another shot whenever I awoke. One of the times I awoke it was dark already and their was a light on in my room and there was a little black girl with pigtails all over her head looking at me from next to the bed and there lo and behold in my room was a gaily colored Choo Choo Train! I swear I am not making any of this up. And this black person is in the Choo Choo says SSSSH! And the little girl says "Daddy what be wrong with the man? and he SHHHH.
I have my eyes squinted trying my best to assay this situation and finally concluded that this guy was the night janitor and the nurses had him draining the catheter bags. His daughter had been at the program I gather and they had taken the janitors electric cart and disguised it as a Choo Choo for the kiddies. So the little girl was riding around with Supa Daddy making his rounds emptying catheter bags. Apparently he drove the Choo Choo into my room. It was great cause it took him about 10 minutes to back out and I was keeping my fingers crossed the thing would be stuck there and see how he would explained that in the morning? LOL
Most of you have NO idea of what happens in hospitals at night. I do and its criminal one place the nurses were so involved in their TV program they wouldn't answer the buzzer so I would just lay on my side and micturated on the floor! LOL You really have no idea and make sure you have someone who KNOWS you well close by to act as your advocate. Trust me on this since they have dug in your skull they will blow you off as delusional ETC.
I have a very keen sense of how things are supposed to be done as Navy CPO this was my forte and I can spot a sham at 1,000 yards. It may look all cozy during the day but when the sun goes down its a different ball game trust me on this. How to avoid it? Well to me if I ever gotta go back in I will call 911 and get the cops involved as the patient advocate goes home and leaves it all up to the head nurse who may or may not know what is going on. So it is also my hope that some of the so called medical professionals will read this and actually go into their hospital at 3 in the morning and see whats going on it is not like the OR and ER staffed by trained individuals?
One stay my room was next to the Nurses station and they kept me awake all night gambling, cards playing Lucky 9 while some crazy old man screamed for hours? You never see this crap walking through at noon on a tour when all the big cheeses are there? I will never be admitted to that Hospital again and had them annotate my records! I have been in all the other Hospitals in Honolulu and have no real problems and if you are reading this and live in Hawaii. Queens Hospital is the BEST hands down the difference is night and day even the orderlies are great.
Update: 28 October 2007
This past week my life has been living hell, why you might ask? GOVERNMENT Health care, for those of you toying with the idea it works let me be the first to tell you it doesnt, I am blessed with 4 health care options and it used to be great when I had 3 but I needed experimental back surgery and Blue Cross wouldnt pay for it so I signed up for Medicare as I am eligible being disabled this was a mistake as once you are on Medicare they become your primary Health insurance as I have been led to believe and will not or cant coordinate benefits and since I live where I do I have to fly to Honolulu for Dr. appointments as we only have a GP here on island.
Well my eye has been messed up for years now and was caused by the morons not patching it properly during my crainiotomy and I now have scar tissue on my cornea and this is a constant source of irriation and my eye runs goop all my wake hours and the vision is blurred so it is a daily reminder of someones mistake and it drives me nuts! I will not rest until something is done I know advances are made daily so I never give up and I have even been so far as to see the best opthamolagist at the time in the state about a cornea transplant and according to him at the time there wouldnt be as much improvement to merit it but I never give up and since this is part of my service connected disabilty I have been on the VA's case to document the damage and so on the 3rd of July this year I was flown to our VA clinic in Honolulu and an eye doctor looked at the eye and finally after over 5 years of carping agreed it was messed up but he told me that there might b a chance as depending on the thickness of my cornea they might be able to repair it! Super! Lets get it done anything has to be better that what I am going through now, in fact at one time I was ready to have them remove the eye!
Now this is where the warning about gubbermin health care comes in as he said he would get me a counsult with the Dr. who does this procedure, FINE I was excited well months go by no appt so I call and press 1 and 2 and other silly crap and get someone who claims to be the Dr. I saw recepcionist and she said she would look into it? Well another month goes by still no appt.? We now have a Dr. who comes once a month to act as our advocate for those of us under the care of the VA so I asked him to look into the situation? He said no problem he knows the doctor and said he would be on vacation till the 14th of October but would check into it when he returned well I try to get ahold of this guy starting the 14th of October and still have not spoken with him but us Navy Chiefs know how the gubbermin game is played the situation was really bad, if there had been some sort of local office I would have gone to jail as I would have gone down and kicked some butt! Well I know what to do and called the PAO for the facility and told them I was going to write an article to our states liberal newspaper and explain the whole sad affair to the public this is worse than moldy walls at Walter Reed believe me and the general public has no idea I also called the head monkey in charge and told him I would get a consult from my civilian Dr. and sue them for the transportation costs! I be tired of playin! Well they got busy finally after I took it to that level and I will be going on the 2nd of November to see the specialist hope it all works out as it would be a MAJOR improvement in my life to have my vision back in my left eye
The point of all this is that government medical may work but I doubt it will in our lifetimes and I feel most if not all Americans with common sense would not want to put up with the attitude that you can be ignored and lied to ? As they wont fire the people who were responsible for this screw up as near as I can tell they faxed the info to the wrong number leaving me hanging for 5 months and HAD I not followed up it would have been forgotton so whatever they try to sell you for 2008 it is a bill of goods at this time not that the civilians are much better but at least if they cost the quack some dinero they get the boot! The person who screwed up 5 months ago is still there and in fact may have moved up another notch since then? How many of you in this country enjoy going to your local DMV? Imagine doing it in pain?
Update 18 April 2008
No rest for the wicked has always been my motto and I try to stay ahead of the game now one of the things I decided way back in 2000 while trying to come up with a plan how to get my life back was to set simple goals and try my best to achieve them, never mind if I will not be as proficient.
Last month I bought my first new motorcycle in over 8 years? LOL I am riding again, not as fast as I used to be but hey it was a strange feeling to climb on a motorcycle again after 8 years my balance is OK but I need more strength which leads up to the next chapter last year in April I was told I was Pre Diabetic? I DONT EVEN want any part of that after all I have been through as I weighed 257 lbs and could barely move? Some little girl PT person showed me some exercises but they are all really nothing and I was walking almost a mile every night but the pounds go slow even though I dont eat much? Well the island I live on has two upscale resorts that the 4 Seasons just took over, mind you I have never stayed in one but from what I gather they are pretty standard worldwide as far as services and amenities.
Anyway both properties had nice Spas and fitness centers but I guess they werent up to the 4 Season standard so they put in all new equipment and donated all the old equipment to our community and we now have a fitness center that is open 7 days a week. I really like using the machines as they support my back and its better than working out at home as they keep track of your progress for example Im almost up to 5 miles on the reticulated bike in a half hour and do 100 90 pound reps on one machine for my back muscles and arms next week I will do 100 at 100 so on I now weigh 220 and want to get down to 200 I suppose as the girls all tell me I look much better with some meat on me? LOL all my adult life I weighed beteen 160 and 170 at 6' 2", the nice thing is that now that Im not 100% physically able (paraphrased) my annual fee is only $16? If you can swing it check out these machines as they are easier to use than free weights and my wife now even goes with me 3 days a week as she likes the treadmill? I tried it and I felt too much like a hamster. But after 4 weeks now I have noticed a definate increase in my energy levels? Dont know why this is I always thought you were supposed to be tired after a workout? Maybe if I reach 70 I can enter an off road race again? Hmmm...
The point of the narrative is we are not disabled nor physically challenged as it is a process of rebuilding yourself as Babies dont drive cars and those of us who are born again dont run before walking that is the message I am trying to convey,it takes time but dont give up it will come but never give up......Don
Update 25 April 2008
Well I just had to share this as Yesterday I went snorkling for the first time by myself in 8 years? This was something I used to do all the time and one of the reasons I live where I do to us here on this island snorkling was not sight seeing but work as I used to spear fish and catch lobster, lots of lobster and dreamt of returning one day as I know the reefs here like the back of my hand. I made a feeble attempt back in 2001 or so but at the time my vision was so bad I could barely see and it broke my heart and depressed me for weeks.
So planning was in order just like the motorcycle and I am blessed that I am able to afford some extras in life and did a search on line and found a company in San Diego that makes perscription dive masks, very nice ones at a reasonable price so I got one then I knew I would not even be able to hold my breath for 2 minutes like I used to, so, the Big speargun for stalking game was out and I didnt need to be in water over my head (6ft) so fins were out and I found some nice rubber booties with non slip felt soles to wear I got a new pole spear and still had my dive float and game bag so it was a go. Yesterday the weather conditions and tide were perfect to go to one of my spots where I used to catch Octopus and away we went my wife is a good sport about such things, the water was soooo nice I would guess about 80 degrees and the sea was calm so in I went? LOL it felt strange being in the water again but good as I had reached another goal I had set for myself.,/
I would gather that most in the family know little if anything about Octopus much less eat them But I enjoy catching and eating them. Here in Hawaii at low tide during daylight hours our Octopus go on the prowl looking for crabs, lobsters and shell fish at high tide they find a depression to sit in and pile stone on top of themselves to hide from large fish who come in over the reef and sea turtles, they can change colors to match their surroundings and are difficult to spot even on a good day the only thing he doesnt know as when he turns over small rocks to cover himself with they are a different color than the surface of surrounding stone and when ever you see one of these craters it is known here as a Tako hole (Tako is Japanese for Octopus) Well the price has gone up on these guys like everything else and we now have only one game warden on the island so the outlaws have been at work? Throughout my whole time in the water I saw no sign of fresh activity in fact I only saw one 4 inch fish? It now seems due to greed the reefs that are easily accesible have been wiped out I had heard this but wanted to see it for myself as often times people who dont know what they are doing gave the reports? It now looks as though I will have to venture back to no mans land to fish, but now due to present conditions the urgency is off we have a marine wildlife preserve on the other side of the island for sight seeing that shows just how bad things have gotten due to poaching and taking undersize game?
About the only problems I encountered were trying to regain my footing when coming ashore trying to stand in the water on a sandy bottom is different, but with my pole spear I made a King Neptune type exit I have another spot in mind and will try it out when I can con someone into driving me there as its about 15 miles of bad dirt road maybe it will be productive, I guess the point Im trying to make with all of this is that we on this journey will find that over the years that things are no longer the same dont let this disappoint you just be glad you were able to enjoy at one point in time as things change, not just us at one time I would have been really depressed but the flood of stupid greed that now inhabits my island is beyond my control and I now eat $5 a pound imported Octopus? This truely is rapidly becoming No country for old men such as myself. It would have been fun to wrestle with a Tako again? Do you know once he comes out of the hole and you have ahold of him several of the eight legs will be working you over and make sure he squirts his ink before you bite his head! LOL their brain is located between their eyes and you have to bite them and give them a lobotomy or they will get out of your bag?
Update 16 May 2008
I have been having a rough week why is it in todays world people try to talk over you and tell you what it is you need? I am a very methodical person and its due to my military background and honesty that I feel slighted when people dont take the time to listen to my requests, I had a situation on Wednesday that pushed me over the edge. I have not been that mad in over 16 years as some retired Admiral was not even listening to the information I was requesting? I have no choice but to call this guy as he now works as a volunteer in our Retired Activities Office and ended up having to get on his case? LOL I am no longer active duty and he tried to pull rank and was sooo upset that I used the lords name in vain? He is lucky I was not in the same room with him as he might have had to dance the funky chicken. I had called this guy with a request the previous week and when I followed up the following week nothing had been done, I get so sick of this apathy and was asking for information on a program he is obviously not familiar with nor would I expect hiom to be but in his role he is required whether he likes it or not to hear me out and direct my inquiry to the proper department and he gets upset because I dont want to play 20 questions with him? The bottom line is lead, follow or get the F out of the way! Guess he never learned that from any of his Chiefs. It is worse when you ae recovering from a TBA as you get the feeling that these people think you are a mental case Why was I upset? The fool cant EVEN begin to realize that I have been tormented by the Veterans administration for almost 8 years now and they still have not honored my requests so if you see me barricaded in s building one day tossing people out the window you will know they have finally left me no other option I often wondered about this sort of behavior but after trying my best for years my patience is wearing thin.
Well after almost 8 years the game just gets better and as I learned around 7 years ago the first liar dont stand a chance the past 6 months or so I have now developed tinnitus and for a guy with hearing in only one ear it sux trust me you dont want to know, So I go to see my GP here and he hooks me up with an ENT guy who I had to spend a couple hundred in transportation costs to find out what I slready know and he suggested my upcoming visit with the new Neurosurgeon might better serve me? LOL I know where this is leading I have not met this new brain surgeon but I get the mean hunch he will try to flog me to the ENT guy? That dog wont hunt and I will smack the bugger If he tries to run this game on me the previous guy who wanted to kill me while I was in a coma has since retired after filling his pockets from my Acoustic Neuroma debaucle which the ENT guy said was unecessary The word to the wise is keep track of every move these people make as I have stated before it is NOT about you but the MONEY period and right now the rats are fleeing the sinking ship as I try to pin people down for statements for my upcoming hearing with the Veterans administration?.....
Update 30n July 2008
Went and saw the new neuro surgeon yesterday and was thrown for a loop in a way, To his credit he seems to be a nice guy and probably very skilled but I was overjoyed at the fact that I dont need another MRI for 4 years and the only restriction he placed on me was not to start smoking or drinking to excess? Still dont know any more about my shunt or my tinnitus which is now in 2 pitches? Oh well no more MRI for 4 years, he said everything looks good I have lost all my muscle mass and so they have to inject the contrast into the veins on the back of my hand while laying in a sewer pipe being assulted by a jack hammer? Nothing was said about the care and feeding of the shunt or the reasons for tinnitus but as long as I can dodge MRI's for 4 years this is a good thing.
Well the 28th of August has come and gone but I have been busy fighting demons so I will try to share as I have not had an easy time of it the past few weeks during my 8 year anniversary. It really started getting bad on the 31st of August when I returned home from church and heard gunfire in front of my house? One thing about gunfire you never forget what it sounds like and I yelled to my wife " Somebody is shooting a gun?" Always the optomist she says "Oh maybe its kids banging on something?" I say "NO Way" and go onto the porch to scope it out?
Well the guy across the street is scampering around with a cell phone calling 911 it seems a guy 2 doors down across the street shot his wife then shot himself in the front yard? I saw a woman in front of their place who turned out to be the girls mother wailing and tried to get her to come to where I was as I dont know if the shooter is still alive? I had guns at that time only 2 left these guns are not for hunting but a semi auto carbine with a 100 round clip and a semi auto pistol and since I was a trained first responder I thought about getting my pistol to go have a look as to my knowledge the wife was pregnant and all I could think about was the baby? But knowing what I know there aint no way Im gonna walk down the street with a pistol after a shots fired call goes in to 911 with the rookie cops we have here? Well the response time was unsatisfactory and the ambulance showed up before the police which is WRONG and they should have stood by till the cops made sure the shooter was dead? Anyway they were even lost and dont know the area, it was like the Keystone cops? Luckily unkown to me the young woman had had the Baby two weeks earlier.
This island has a population of less than 3000 so we all pretty much know each other and I knew this young man fairly well having worked with him for 5 years and had him work for me here at my house doing tile work from time to time, between them they have 5 children, all good kids and so I never saw this coming?
Not many of you know I am under the care of the Veterans administration and am 90% disabiled service connected but am rated 100% due to unemployability and I can assure you I am now well over 100% now from other wonderful things like the on set of type 2 diabetes thanks to drinking agent orange in the Tonkin Gulf?
It took me awhile to prove my initial claim with the VA about 3 years as I recall and more things have happened since the aneurysm burst that were brought on by the original condition a brain tumor I was growing on active duty, I dont think that most of you are aware that in 2004 Congress overturned an old law that kept us Veterans from drawing our military retirement and VA compensation at the same time? I am owed a lot of money at this time and am in the process of trying to get it back plus am very depressed as the day after this guy offs his wife and himself my best friends son drops dead from a heart attack leaving behind a wife and 4 kids? He was only 37 and in EXCELLENT physical shape, he had an enlarged heart or some strange thing and dropped dead at a softball game on labor day?
I have been having a lot of bad thoughts lately due to the amazing lack of care from the Veterans administration so last week I called the police and had them come over and gave them my guns as Im begining to understand why people resort to violence to get things done? I am getting tired of being ignored and voice mail? I CANNOT even begin to describe the anger I feel at voice mail during normal working hours? I dont know how many of you have ever served in the military but back in my young days at least two nights a month someplace I would have to sit next to a telephone from midnight to eight in the morning in case it rang to deal with whatever the problem may be, but today after pressing all sorts of options you are lucky if you can speak to a human who I can guarantee knows little or anything? I was so pissed Friday I called the VA suicide hot line, not that Im gonna kill myself but how about a few worthless government employees? Only to be told the supervisor wont be available till Monday? Trust me I will get to the bottom of it as I am wired that way but lo to those who try to hamper my efforts? My Veterans Service officer cannot even get me an appointment at mental health to be screened for depression? It dont get no beter than this so for those of you who think socialized medicine will work Im here to tell you FORGET it.
The saga continues, on Monday I flew to Honolulu for a consult with a doctor about having a BAHA implant done so I can hear on my left side again after talking with the doc I decided against it as I always have bad luck when somebody cuts on me they said they have a new type of hearing aid that will transfer the sound from my left to right side that does not involve them cutting on me or installing a metal pin in my skull, I guees I am gun shy now. Once again the clowns at TSA tried to treat me like Bin Laden I will deal with them separate as I refuse to eat the crap sandwhich?
Two things of note I now have a grandaughter in additon to my Grandson and ahe will visit us in January and the update I made in May concerning the silly retired Admiral has come almost to an end as I got most of my Retroactive Retirement pay that he was unaware of the program almost worth flying to Honolulu to rub his face in it? Hope Everybody has a happy holiday season, I was thinking that when I joined this group I was on page 10 we are now up to page 20? And its a sad comment that so many have to go through these things in this day and age this is why if it were up to me an MRI of ones brain would be part of a physical in later life?
Well time keeps rolling by this year got off to a great start with a visit from my Son and family, today was a busy day as I had a crew from Maui over installing my solar water heating system. It seems to be working well hopefully it will save me some major dinero as we have the highest electric costs in the nation I do believe, happy I can still afford such things. I will be making the annual trek to my tax lady Saturday hopefully this will all pan out in my favor as I am also supposed to get a large write off for having an electric car? We shall see.
Yesterday my wife and I had the pleasure of spending a day with Maggie Vitek and her husband Randy here on Lanai, I have been fortunate enough to have met with 5 aneurysm survivors since I had mine and four of them are women? LOL so much for the guys and it is interesting to me that the ladies seem to fare much better through the process? All 4 are still working and upbeat about their situation I am sure they have their moments but as Rod Stewart sang they wear it well, as a former US Navy CPO one of the skills that made me successful was my ability to judge character and these gals all have what it takes 3 are part of this family so dont get big heads! LOL but for real all are working at what they enjoy and unlike myself and my friend Lui seem to have none of the after effects such as we suffer? Maybe the testosterone interferes with healing the brain?
Well the fun just continues I was a candidate for a prosthesis to try to get my hand working again so a few weeks back I flew to Honolulu to meet with a physical therapist to see the device and have a look, as they wanted to work with me for a couple of weeks? The guy after meeting him and following him back to a table told me that I am beyond the device and it would not help much he told me I have Apraxia which is the impairment or loss of ability to perform a learned behavior! BINGO! Finally after almost 9 years of pulling my hair out I now know whats wrong! This really pisses me off as over the past years I have been to NUMEROUS Doctors and nobody knew? I guess not much can be done except physical therapy, but I have wasted almost 9 years towards trying to work it out? I am so tired of apathy wish I could find someone who really knew what all ails us following a Brain Aneurysm? And can recommend the proper paths to recovery? Im so tired of being led astray? I now have begun my battle with the VA to get this diagnosed and am blessed I also have civilian insurance so I went to my GP today to have him hook me up with a civilian to diagnose and evaluate me also as the VA will no doubt botch it as they have everything in the past? Some might think Why bother? You are just lucky to be alive? Well a few weeks back I saw an old friend of mine who had a stroke about the same time I had my aneurysm and it scared me? He was a frail old white haired man in a wheel chair his eyes looked out in terror as people loaded him into a van after visiting the Dentist, I used to try to work with him, since his wife does not seem to care he is almost gone? I gave up as the wife will not follow up and the kids are now grown and gone It really hit me how blessed I am to have a family who cares about me other wise I would be in the same boat I reckon. There is no guarantee I will ever be able to do a lot of the things I used to. But I will die trying. This friend, it is obvious to the most casual observer has given up? My heart went out to him as he was much more mobile than me a few years back? He wasted so much time trying quack cures in the Philippines at the advice of the wife who just wanted a trip home? He did not even recognize me? His eyes were all crazy, DO Not EVER give up!
Well I was going to update following my firsr ever visit to a neuropsychologist concerning my Apraxia on the 24th of this month almost 9 years after the fact but have been simmering in my own juices for months now and getting angrier by the day at our stupid Veterans Administration who is making my life miserable and wanted to warn each and EVERY one of you, socilaized medicine does not and will not work as I found out when I went on Medicare after going on SSDI? My federal blue cross plan is still current paid for life out of my federal annuity but the geeks CANNOT or Will NOT coordinate benefits so I had to go back to using the VA as at least they pay my transportation costs as all you can do here on my island is DIE, everything else you have to go to Honolulu for? About the best description I can give you it is sort of like going to your local DMV for healthcare? I am blessed to have 4 health care options so I know a little about the situation and the Federal Blue Cross by far is the best! Right now I have to go to the orthopedic surgeon and neuro opthamologist again to get proof that the VA refuses to acknowledge to use in my upcoming hearing? The fools there want to try to 2nd guess EVERY Dr. Except their own so stand by if we go to a national healthcare system this will be the rule rather than the exception. Trust me I know, anyway I hope I can find out more about my condition as I understand it there is no cure other than trying to overcome the loss through repeated physical action which I wish I had known about as I have wasted many years. I will update for real following the visit if I do not end up in jail as if the TSA jacks me around at the airport again it will not go well!
Well its official I am now Brenda..... what is Brenda? In the Philippines it is slang for brain damaged? LOL Anyway yesterday I spent over 3 hours being tested by a neuro psycholigist something I wish had been done about 8 years ago/ It was pretty spooky one of the tests involved something similar to a cribbage board with pins that were shaped in cross section like the numbe 8 at different angles and positions with my right hand I stuck them all in no problem within the time frame but with the left hand? What a mess? I didnt even get two rows and there were pins scattered all over? This is something I assure you 20 years ago I could have done blindfolded even though I am right handed? He is not sure I have the Apraxia as initially thought by the therapist I sure wish I knew about this earlier so I could have devoted more time into trying to correct it? If you can swing it get to a neuropsycholigist and be tested most of the other stuff was OK, memory and so on but for somebody who used to make their living with their hands this is depressing, this is why I no longer can play guitar either?
Well as they say there is no rest for the wicked, This Monday I had to travel to Honolulu for a hearing with the VA which is pretty sad in my opinion but hey what do I know? Now I am in the process to see if they will finally grant me my right rating I am rated at 90% 100% due to unemployability but since that was assigned I have almost died two more times and now have a myriad of other problems that stem from the original brain tumor and want them to do their job and get it written up and if they cannot correct it the compensate me at100% instead of 90 at 100 which gives them the option to withhold some of my dinero? To date they have only cured my heartburn. Thanks for the kind words Maggie it was a pleasure for Sofia and I to spend a day with you and Randy and I will go out and extend the invitation to anyone who is in the family and is on Maui to come visit for the day, our Hotels here on Lanai are way too expensive so Maui is a barging. Funny she should mention my Pablo cat who damaged me last night, I have had a lot of mystery aches lately and a friend suggested Buckwheat pillows? Well in for a penny in for a pound and I ordered some, they are great and I no longer have a sore right shoulder, but However Mr. Pablo the Cat likes them also and when I came to bed last night he was atop the pillow sleeping "toaster style" for those of you who know about cats this is when they sleep with their feet under them to keep their toes warm as it gets cool here at night around 65 degrees so I get on the computer to check my mail before hitting the hay and as always he comes to be brushed and eat a snack. Well in about an hour I go to bed and he comes and gets on top the bed and was laying between the wife and I then he gets up and comes over me to the side of the bed on the edge facing the door where he usually sleeps at about waist height atop the covers and by then I am about to doze off when he is up next to my face and nips my right arm which is under the new Buckwheat pillow! Then he socks my head 4 or 5 times to get me off it! Lucky he did not hit my good eye! LOL I was bleeding like a stuck pig and of course I flew his striped ass across the room! He thinks that pillow is HIS! The wife got up and put peroxide on the damage and he meekly came back to bed and behaved an hour or so later. This Friday I get to travel again to have a yak with a Psychiatrist? This should be fun maybe she can further dwell on Maggie's assumptions of my pirate life, I think I will share with her about when I used to date little people! One actually was called Dolly and was the bartender at a bar named the Valley of the Dolls! Oh what tame lives you have led, or my Dwarf Body Guards or spending the day bar hopping in a funeral hearse! Sometimes I think back about it all and start laughing and my wife glares at me? I wish I had movies of it all as it is often hard for others to fathom but it is true all of it, So much FUN so little time glad I did it all now seeing how things turned out so I don't have to wonder.
It dont get no better than this no sooner then I get my correct rating with the VA and the adapted housing I had a friend over helping me hook up this new computer and he pipes up and says "Don, you know your speech is getting slurred" so after he leaves I ask the wife who in her ultimate wisdom says "Oh Yeah,been like that for awhile?" Well I start pokin around on the internet and everything I see about slurred speech is not good except getting drunk? I try to schedule an appointment and I won't go into detail of how absurd things are now and finally ended up going to the ER since it is impossible to refer yourself? Well this last Tuesday I fly to Honolulu for an MRI and a consult with the neurosurgeon who told me last year I didnt need another MRI till 2012? After being stuffed in the pipe for an hour or so they sit me in a room and sweat me for an hour then the guy comes in and asks me if I will be going home???? Hope to shout skippy I didnt even want to be there in the first place? It seems as I have new brain tumor a big bugger about the size of a chicken egg? I was bummed and came home and the guy takes the rest of the week off and leaves me hanging I have to cough up $500 to fly back on the 29th of this month for another "SPECIAL" MRI so sick of it and If I did not have a wife kids and grandkids and pets i would tell em all to pack sand and just blow it off? What does anybody know about neuro-endroscopic removal? My life has been hosed ever since 2001 when they cut my lid open? Then in 2002 I had to undergo a gamma knife to kill the part he couldnt get out? Bet that is what caused this new tumor? As to date NOBODY has followed up on the Gamma Knife crap? If I got brain cancer I am gonna be pissed, I will be a dead man walking then but I wont go easy trust me and it would probably be best to lock me up as I WILL get me some pay back before I go out! I guess my problem is I am smart enough to see through the ruse as in this business the first liar dont stand a chance?
Well here it is THREE weeks after seeing a object on my brain that might be a tumor I now have an appointment on the 30th of December to see a neurosurgeon on Maui as I WILL NOT GO BACK to the previous one? Most people in this country today are totally unaware of the lack of service and are too dumb to realize they are being taken to the cleaners, my father would have never spoken to a machine I will not either in fact I REFUSE to put one in my house? Just for the record we need people to realize the only way they will get better is to raise hell about this crap? My insurance gets billed a $150 and the Dr.here has to stop what he is doing for an administrative matter to refer me? To them its no big deal its abut the money?LOL I am going to play this to the hilt I think since it is the area that controls speech I will now scream obscenities whenever I feel like it in stores ETC.? Have some fun before I croak! Once I get it in writing I will stop by the Wal Mart so I can spend some time making crude comments GET OUT THE WAY! DEAD MAN RIDING!
Well as far as decades go this last one was the worst for me in most ways? After them discovering what looks like a new tumor in my brain on 13 of October I am no further along? And that is the point of this update after almost a month of fumbling around I had to tell the original Neuro to pack sand and had to wait till the 30th of December to go see a new one, I have heard good things about him but the system blows trust me always follow up I went there to meet him and we talked, I know the drill but they did not even have my most recent MRI's and so I had to get someone to fill out a mother may I note to the other guy to get them over to him and when I got home a little birdie kept telling me to follow up and so the Next day I did and nothing had been done? With the Holiday who knows what would have happened? Luckily for me I got a sensible young woman at my former hospital who was willing to call them and the Imaging Dept.? And she assured me they should have them on Monday when they come to work? We shall see and you can rest assured that I will follow up on Monday morning to see if in fact this transpired it will only get worse if we go to some sort of government system trust me on this one this is why I no longer use the VA asI would have probably spent at least 2 days pushing 1&2 and leaving voice mails trying to unscrew this. It is really starting to get bad and the best I can tell you is stay alert and follow up. I hope if I can beat this one it will be smooth sailing for the rest of my days but if the sucker is malignant all bets are off? I just dont think I am up for ANYBODY cutting my lid open again!
Well its pretty much official now, went over to Maui again yesterday and the results seem to be in. It is some sort of growth that can't be operated on and he will be sending the MRI's out to some other Dr. and to my health insurance on Monday. I guess they will try to poison me or zap it with something. Meanwhile all the physical progress that I have made over the past decade is fading away. It really sucks but hey that's the way things are. I keep trying not to dwell on it but now as I sit here with one eye open, tinnitus screaming away and drooling like a big dog I can't help but be angry at the worthless system that torments the average guy like me. I almost feel that I have to do something drastic before I can draw attention to my plight. It has been over 6 months now and we still have not come up with a plan. I thank God that I have resources though and a wonderful wife and family and friends as I know I wouldn't have got this far and so today even under this cloud the gloves come off and its Steak and Lobster in the backyard thats one of the main reasons I live here you can enjoy outside all year round. As my condition deteriorates the Docs will be very happy as my wife will let them have their way and I pray the end will be swift as I HAVE done the whole home care route and it SUX and I dont think a guy like me is capable of Hospice if they have it here now. Anyway that is where the deal is now so for those of you who have survived do not let them lull you to be non vigilant! This whole event was initiated by a friend noticing a change in my voice. I highly doubt I am the first guy ever to have a growth in this area and I bet they know to the day how long I got left why they don't give me a prescription for Crystal Meth or SOMETHING to perk me up?
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