Well I didn't go to Dr. Pal this morning. At 4:30 I woke up and heard Mathie crying, and her feet hitting the dresser, which was weird, because she fell asleep on the other side of the bed...
Well she got over there on her own. She is unable to stand up by herself. She kind of flings herself around trying but can't get up. If in fact she did writhe around till she got over that way, she was probably exhausted, and on the verge of dehydrated.
I laid with her for two hours, offering her water every few minutes, and helping her to rest and relax enough to fall asleep.
Every couple of days I go through this with her. Of course...every few days I think this is it, and she rally's and seems better than the day before. Today after last night or early this morning... she is better than she was the last few days.
I know this is normal, but still, I will never get used to it. I spend 2 hours sobbing like a baby, thinking I am going to be saying good bye, and she pull a fast one...
Not that I am upset... don't get me wrong... I hope she sticks around forever, however she has become totally dependent on me. If I leave the room, the little thing hobbles after me, if she can't find me she cries and cries till she finds me or she collapses. This just started on Wednesday. Not the crying part, but the collapsing part. The exhausted on the verge of giving up, part.
Now we have to pick up two pieces of furniture down in Boynton Beach before the 15th of November. We were also going to visit a friend who lives in Tamarac. So... something has to be postponed
Gotta go...Mathie is staring at me... I think she wants to go down stair....
Friday, October 29, 2010
Thursday, October 28, 2010
The Day after...
It is the day after. Thursday. I am still amazed at the appointment I had yesterday, and appreciative of the words of encouragement from the anonymous reader. I am not sure I will be able to find someone, but I will not give up.
I fell again today, in the court yard. I was close to the ground already, almost down on my knees. I fell once again flat on my face...scratched my glasses. Not the lenses, than got, but the bridge, and really scratched up the bridge of my nose. Nice red, about the size of a big pea, abrasion on the bridge.
I was leaning forward to coax my Mathie toward the dog bed I brought out for her.
After I fell, I tried to quickly determine why I feel... this is going back to the question that was asked by the Dr. Now this is a tough question... I lost my balance.. but why... Well, it felt like someone shifted the ground beneath my feet. I know they didn't, but that is how it felt. I guess you could say I got dizzy. I might add the last time I fell like this, was when I first had the outward problems, in 2005. I fell in the courtyard, also.
Now, I have a funny headache, and I am very tired. Like I could go to sleep tired. I shouldn't be tired. I got up at 8:00 this morning, and was in bed by 10:30 last night. I really should have gone to the supermarket today, but I really am too tired...
But it must all be in my head, the dizziness, the fatigue, sensitivity to light. And of course that is no reason why I can't work, although this isn't going to get any better...I can tell you that falling isn't going to make it any easier, or make me get better.
Tomorrow is Dr. Pal's appointment for Mom and I. She will ask me what I thought of the Dr. yesterday. I will have to tell her...Tuesday is the Internist appointment.
Keep your fingers crossed.
I fell again today, in the court yard. I was close to the ground already, almost down on my knees. I fell once again flat on my face...scratched my glasses. Not the lenses, than got, but the bridge, and really scratched up the bridge of my nose. Nice red, about the size of a big pea, abrasion on the bridge.
I was leaning forward to coax my Mathie toward the dog bed I brought out for her.
After I fell, I tried to quickly determine why I feel... this is going back to the question that was asked by the Dr. Now this is a tough question... I lost my balance.. but why... Well, it felt like someone shifted the ground beneath my feet. I know they didn't, but that is how it felt. I guess you could say I got dizzy. I might add the last time I fell like this, was when I first had the outward problems, in 2005. I fell in the courtyard, also.
Now, I have a funny headache, and I am very tired. Like I could go to sleep tired. I shouldn't be tired. I got up at 8:00 this morning, and was in bed by 10:30 last night. I really should have gone to the supermarket today, but I really am too tired...
But it must all be in my head, the dizziness, the fatigue, sensitivity to light. And of course that is no reason why I can't work, although this isn't going to get any better...I can tell you that falling isn't going to make it any easier, or make me get better.
Tomorrow is Dr. Pal's appointment for Mom and I. She will ask me what I thought of the Dr. yesterday. I will have to tell her...Tuesday is the Internist appointment.
Keep your fingers crossed.
Wednesday, October 27, 2010
I want to say up front... I am not finding fault with the Medical Community...
... However...This is what happened today.
First let me say that at least two times in the past, I was asked if I wanted to see a Neuro-Ophthalmologist. The first time I said, not right now... since I wasn't having any problems. The second time I was told that is who I should see base upon my problems. So I was referred to one, I call, explained my problem, Angioma, fell a few times, intermittent double vision, blurred vision, intermittent dizziness. I had my ophthalmic records faxed to this doctor. I then received the call that the doctor looked at my records and said, "Have her come in" So that is what I did. I brought all my MRI's, medical records, except from the Neurosurgeon, since they wanted $1 a page for the first 25 pages. I could reiterate what the doctor said...even though that wasn't good enough.
The first thing this Doctor said, when I sat down was what is your problem. So I said, I have an Angioma, on my brain stem. So she said, that isn't the problem, that is what is wrong with you, or what you have... what is your problem... ? Well, needless to say, that took me back. So I said, well I have double vision, Nystagmus (she corrected my pronunciation), so she asked when I first noticed that, and I told her while I was driving, and I was scanning the horizon, and I couldn't scan smoothly, it was jumpy. So then we debated whether my eye were jumpy or the objects were. (????? I guess since I wasn't looking in a mirror, so I couldn't see what my eyes were doing...the objects were, however, they were not movable objects, so I guess it was my eyes... because I know the light pole can't jump... Wait... I don't understand the question...?) Then she said, you know there is nothing I can do for you... right...? If you want me to do something for you, I can't. I thank you for wanting to see me, that is very nice, and I appreciate that... (oh, well then let me leave... That way I can go eat lunch, and so can you... and by the way, wasn't it your receptionist who called me because you said I could be seen? I asked first, really I did... I told her why I wanted to be seen, and if I should come in to see you, and she said have your records faxed over, and I will ask the doctor... I did, she did, and I am here...What am I missing...?)
Ok, so we go through the whole thing, and she is looking to see if I would benefit from prisms, and then she dilates my eyes... and we wait... she calls me back, looks inside my eye, and then says well, there really isn't anything I can do for you... As far as work, the only people who are not able to work because they can't see out of one eye are NeuroSurgeons, and Fighter Pilots... I guess that leaves me out...
Well anyway... another dead end. Oh wait... she did say, I am surprised you aren't having more problems then this... (Based on what... what is wrong with me? But wait... you don't want to know what I have or what is wrong with me. Right?) She said from looking at me... (here we go... the neighbor can look at me and make a determination about me... I am not asking him, I am asking a specialist. The person who is supposed to know what that thing in my head will do to me, and how that should affect my life...but you can only make a judgment according to what you see. And you don't want to know what is wrong with me...you want to know what my problem is...OH GOD I AM SOOOOO CONFUSED!!!)
Well anyway, she asked me why I was falling, so I said, I am losing my balance... so she said... well that could be from anything, maybe you are attributing it to the Angioma, but it isn't that at all... Maybe it is Cardio...
Honestly... I don't know, and personally I think I am crazy, because, I should be having more trouble than I seem to have (based upon my films but that isn't what we are concerned with, we are concerned with how I look)... because from looking at me, I don't have any problems. Too bad I am not just looking at me, instead looking from me... because if I were just looking at me, I would be fine. And since everyone else is looking at me... well, hmmpf... that is all that matters right?
I am glad we cleared that up...!
First let me say that at least two times in the past, I was asked if I wanted to see a Neuro-Ophthalmologist. The first time I said, not right now... since I wasn't having any problems. The second time I was told that is who I should see base upon my problems. So I was referred to one, I call, explained my problem, Angioma, fell a few times, intermittent double vision, blurred vision, intermittent dizziness. I had my ophthalmic records faxed to this doctor. I then received the call that the doctor looked at my records and said, "Have her come in" So that is what I did. I brought all my MRI's, medical records, except from the Neurosurgeon, since they wanted $1 a page for the first 25 pages. I could reiterate what the doctor said...even though that wasn't good enough.
The first thing this Doctor said, when I sat down was what is your problem. So I said, I have an Angioma, on my brain stem. So she said, that isn't the problem, that is what is wrong with you, or what you have... what is your problem... ? Well, needless to say, that took me back. So I said, well I have double vision, Nystagmus (she corrected my pronunciation), so she asked when I first noticed that, and I told her while I was driving, and I was scanning the horizon, and I couldn't scan smoothly, it was jumpy. So then we debated whether my eye were jumpy or the objects were. (????? I guess since I wasn't looking in a mirror, so I couldn't see what my eyes were doing...the objects were, however, they were not movable objects, so I guess it was my eyes... because I know the light pole can't jump... Wait... I don't understand the question...?) Then she said, you know there is nothing I can do for you... right...? If you want me to do something for you, I can't. I thank you for wanting to see me, that is very nice, and I appreciate that... (oh, well then let me leave... That way I can go eat lunch, and so can you... and by the way, wasn't it your receptionist who called me because you said I could be seen? I asked first, really I did... I told her why I wanted to be seen, and if I should come in to see you, and she said have your records faxed over, and I will ask the doctor... I did, she did, and I am here...What am I missing...?)
Ok, so we go through the whole thing, and she is looking to see if I would benefit from prisms, and then she dilates my eyes... and we wait... she calls me back, looks inside my eye, and then says well, there really isn't anything I can do for you... As far as work, the only people who are not able to work because they can't see out of one eye are NeuroSurgeons, and Fighter Pilots... I guess that leaves me out...
Well anyway... another dead end. Oh wait... she did say, I am surprised you aren't having more problems then this... (Based on what... what is wrong with me? But wait... you don't want to know what I have or what is wrong with me. Right?) She said from looking at me... (here we go... the neighbor can look at me and make a determination about me... I am not asking him, I am asking a specialist. The person who is supposed to know what that thing in my head will do to me, and how that should affect my life...but you can only make a judgment according to what you see. And you don't want to know what is wrong with me...you want to know what my problem is...OH GOD I AM SOOOOO CONFUSED!!!)
Well anyway, she asked me why I was falling, so I said, I am losing my balance... so she said... well that could be from anything, maybe you are attributing it to the Angioma, but it isn't that at all... Maybe it is Cardio...
Honestly... I don't know, and personally I think I am crazy, because, I should be having more trouble than I seem to have (based upon my films but that isn't what we are concerned with, we are concerned with how I look)... because from looking at me, I don't have any problems. Too bad I am not just looking at me, instead looking from me... because if I were just looking at me, I would be fine. And since everyone else is looking at me... well, hmmpf... that is all that matters right?
I am glad we cleared that up...!
Saturday, October 23, 2010
Today is Saturday...
...and we went to a German Festival last night at Trinity Lutheran Evangelical Church downtown Orlando. It was interesting.. veeeerrrrryyyy small compared to the German Festivals I have been to. I had 2 Warsteiners, and they had Bratwurst dinner, but the bratwurst was smoked. Just for the record, I don't like smoked Bratwurst. The potato pancakes, well, they weren't like they make in Franklin Square. All in all.. they have something to learn from us "up north".... They hate it when you say that down here....
We ran into an x-coworker of George. He was playing in one of the bands last night... "The Brew"
The other band was the "Swinging Bavarians" they were a German Band as would be expected from the name.
I am planning on going to the movies today to see "The Town" It is a Ben Afleck movie, and takes place in Boston. Jon Hamm is in it.. plays a police chief apparently.
Dinner tonight is a twist on Chicken Caccitora...
X-Factor England is on tonight... and then bed.
Pretty exciting, huh.
4 days until my office visit with my Neuro-Ophthalmologist. 10 days till my visit with my new Internist, and 26 days until I find out my fate with work, or the next step with work.
Oh, I fell again one night last week. This time a chair came down on top of me.... I was ok... small bruise on my arm, but.. I fell again.
Well better get in the shower, and eat some lunch....
We ran into an x-coworker of George. He was playing in one of the bands last night... "The Brew"
The other band was the "Swinging Bavarians" they were a German Band as would be expected from the name.
I am planning on going to the movies today to see "The Town" It is a Ben Afleck movie, and takes place in Boston. Jon Hamm is in it.. plays a police chief apparently.
Dinner tonight is a twist on Chicken Caccitora...
X-Factor England is on tonight... and then bed.
Pretty exciting, huh.
4 days until my office visit with my Neuro-Ophthalmologist. 10 days till my visit with my new Internist, and 26 days until I find out my fate with work, or the next step with work.
Oh, I fell again one night last week. This time a chair came down on top of me.... I was ok... small bruise on my arm, but.. I fell again.
Well better get in the shower, and eat some lunch....
Thursday, October 21, 2010
I started a Blog/Hub with Recipes...
where I publicize what I made for dinner last night. In fact that is what it is called. "What is for Dinner Tonight XX-XX-XX (that is where I put the date...)
http://hubpages.com/profile/Heidi+R-C
It is my attempt at trying to publish recipes, and ideas. It isn't much really, but I put it out there in the hopes that it would be of interest to someone... anyone.
It has been interesting, and I guess it is a start... well, I guess I am just down in general. It is hard for me to get excited about anything right now. I will keep it up, for what it is worth. I guess if I am getting bored with it now... why wouldn't anyone else... right?
I have an appointment next week with a Neuro-Ophthalmologist. She wanted a copy of my Neurosurgeons office notes, and I was happy to oblige, except, when I called his office I was told that there would be a charge of $1 a page for the first 25 pages, and then .25 a page there after. Personally, I can tell her what he said, and it would be much cheaper. So I will bring some of my MRI's (3 of them 2006, 2009, and 2010), plus the records from the Dr. in Tampa, which state that I have carcinoma, which is not what I have...because if I did... I would be dead right now... but don't question the expert...even if he is wrong. The note from Dr. Spetzler... which simply says that he is willing to operate, which is fine, but leaves out the part about, how I may not get better, and the recuperation will be long. Other than that... that is all I have...which really when you look at it...it isn't much. I saw a Neurologist, and she referred me to the Neuro-Surgeon.
My Ophthalmologist told me that I was going to have to navigate the medical system like this... and that is what I am doing... but while doing that, I am running out of time. Don't take that the wrong way... when I say time, I mean.. I am running out of time where I will not be destitute financially.
So that is where the recipe hub comes in.
Well, anyway.. if you read this, and have any interest in the other, or find any redeeming value to the other... give it a try, and look at the ads associated with it. It isn't going to make me rich... (not by any stretch of the imagination...), but it will give me a little bit of satisfaction to know that I am doing something that isn't totally useless...
I will get through this... not sure how I will come out on the other end though...
http://hubpages.com/profile/Heidi+R-C
It is my attempt at trying to publish recipes, and ideas. It isn't much really, but I put it out there in the hopes that it would be of interest to someone... anyone.
It has been interesting, and I guess it is a start... well, I guess I am just down in general. It is hard for me to get excited about anything right now. I will keep it up, for what it is worth. I guess if I am getting bored with it now... why wouldn't anyone else... right?
I have an appointment next week with a Neuro-Ophthalmologist. She wanted a copy of my Neurosurgeons office notes, and I was happy to oblige, except, when I called his office I was told that there would be a charge of $1 a page for the first 25 pages, and then .25 a page there after. Personally, I can tell her what he said, and it would be much cheaper. So I will bring some of my MRI's (3 of them 2006, 2009, and 2010), plus the records from the Dr. in Tampa, which state that I have carcinoma, which is not what I have...because if I did... I would be dead right now... but don't question the expert...even if he is wrong. The note from Dr. Spetzler... which simply says that he is willing to operate, which is fine, but leaves out the part about, how I may not get better, and the recuperation will be long. Other than that... that is all I have...which really when you look at it...it isn't much. I saw a Neurologist, and she referred me to the Neuro-Surgeon.
My Ophthalmologist told me that I was going to have to navigate the medical system like this... and that is what I am doing... but while doing that, I am running out of time. Don't take that the wrong way... when I say time, I mean.. I am running out of time where I will not be destitute financially.
So that is where the recipe hub comes in.
Well, anyway.. if you read this, and have any interest in the other, or find any redeeming value to the other... give it a try, and look at the ads associated with it. It isn't going to make me rich... (not by any stretch of the imagination...), but it will give me a little bit of satisfaction to know that I am doing something that isn't totally useless...
I will get through this... not sure how I will come out on the other end though...
Wednesday, October 20, 2010
So this is the deal...
... I was taken off work by my doctor until January 3rd. The paper work ("official" paperwork) was sent to the mother ship in September. I received word back from the mother ship, that they weren't recognizing the January 3rd date, and they wanted to re-assess the disability on 11-19-10 or there about...
Now, I am not sure what that means. Apparently she (mother ship technician) didn't either, or maybe she didn't know how to express herself, or maybe she wasn't instructed how to express the views of the company, which may not or may not be the same as hers, but her own opinions and feeling are slowly, very slowly, being sucked out of her for a false feeling of security and safe keeping.
So now, I am 30 days away from knowing... or... not knowing what my fate will be. I am also approximately 30 days from (in the other direction) knowing that my fate is in question. So that means... for 60 days, I will be in limbo, not knowing, what will happen to me.
Let's not even talk about what is wrong with me... Yea...let's talk about what is wrong with me... That I know. I know all the stuff that is not good... It is the good stuff I don't know... How depressing is that?
I know that I have a cluster of blood vessels on my brain stem...I know that I have two more clusters located in other parts of my brain, but no one ever went into detail with those. I think that has to do with the wait and see approach. See... no knows what causes these clusters to grow, or ooze (what you and I may call bleed. Since it is blood, and the blood dissipates, but leave hemisderin or iron, which along with blood is an irritant to brain tissue), and since they don't create a problem until they do...well, what we don't know won't hurt us... ahaaaa, or will it....?
But let's go with it won't or it isn't hurting us. I still have this one cluster or (not so commonly known) ANGIOMA. (By the way, spell check doesn't recognize it, but that is ok... Most doctors run away from it too. Hence the wait and see approach.) Now, let me say in all honesty... I don't mind the wait and see approach. I am 52 (don't say that isn't old, that depends on your perspective...), I don't have any children, and quite honestly, this world really does stink... as it is today anyway, but the Yankees are behind in the ALCS... that is a positive! In all seriousness, I have to fight for everything, I mean fight and worry. I hit closed doors more than open ones. Now that could change any day... but for arguments sake speaking for today, it stinks.
Back to the Angioma... this lesion as it is referred to, has grown in the last 15 years more than 2.5 times it's size. I don't know if it plans on stopping or not. It has bled (or oozed) a few times, which can cause anywhere from a headache to numbness to dizziness, possibly paralysis, or coma. These are the facts that I know. What I don't know is when this could happen, or what causes it to happen.
Now... let's play the devils advocate... do any of us really know? Do any of us really know what will be our demise. No, and given the chance to find out... very, very few of us would want to know. Most of us want to go on through life, doing our thing, and be hit between the eyes with it at some point. However, most of us want the opportunity to avoid that fate...with diet, exercise, avoiding bad habits like smoking, sky diving... (just kidding I just threw that in to see if you were paying attention....I am not putting a bad light on sky diving...) However... my fellow stemmies and I don't have a clue. We are flying by the seat of our pants so to speak. In fact I have been since 1995. Today, I am saying, ENOUGH. Today I am saying, I may know that I theoretically have a ticking time bomb in my head, and not knowing when it will or how it will go off, or what I will be doing... or what I will do to make it happen, has gone on long enough. I can't do it all anymore. Quite honestly, I don't want to. Don't take this the wrong way... I am not looking to end it all.. I just want some help.
The dizziness I experience on a daily basis, the intermittent nausea, the insecure feeling I get in public add to that the chore of getting up every morning, fighting the traffic, dealing with piss pour personalities (that is if there is a personality at all), the aggravation of being told I just am not good enough, and then, when we are we are "rewarded" with a Hamburger, or a T-Shirt, then the daily chores associated with a family (that is right... I have no children, but I do have a family that I care for, and nurture, and worry about...!), are really a lot to handle.
What I really dread are the looks from people, the disappointed, disapproving looks. 'Poor dear, she is giving up...' Or... 'She wants to be supported by the system... what does she think... this is Sweden?' (If only this were Sweden...)
I know I look like everything is fine... but take my word for it... it isn't. Most of my day it is overwhelming. It is all consuming. I have fought the good fight, and I am not raising a white flag... I am asking for reinforcement!
Now, I am not sure what that means. Apparently she (mother ship technician) didn't either, or maybe she didn't know how to express herself, or maybe she wasn't instructed how to express the views of the company, which may not or may not be the same as hers, but her own opinions and feeling are slowly, very slowly, being sucked out of her for a false feeling of security and safe keeping.
So now, I am 30 days away from knowing... or... not knowing what my fate will be. I am also approximately 30 days from (in the other direction) knowing that my fate is in question. So that means... for 60 days, I will be in limbo, not knowing, what will happen to me.
Let's not even talk about what is wrong with me... Yea...let's talk about what is wrong with me... That I know. I know all the stuff that is not good... It is the good stuff I don't know... How depressing is that?
I know that I have a cluster of blood vessels on my brain stem...I know that I have two more clusters located in other parts of my brain, but no one ever went into detail with those. I think that has to do with the wait and see approach. See... no knows what causes these clusters to grow, or ooze (what you and I may call bleed. Since it is blood, and the blood dissipates, but leave hemisderin or iron, which along with blood is an irritant to brain tissue), and since they don't create a problem until they do...well, what we don't know won't hurt us... ahaaaa, or will it....?
But let's go with it won't or it isn't hurting us. I still have this one cluster or (not so commonly known) ANGIOMA. (By the way, spell check doesn't recognize it, but that is ok... Most doctors run away from it too. Hence the wait and see approach.) Now, let me say in all honesty... I don't mind the wait and see approach. I am 52 (don't say that isn't old, that depends on your perspective...), I don't have any children, and quite honestly, this world really does stink... as it is today anyway, but the Yankees are behind in the ALCS... that is a positive! In all seriousness, I have to fight for everything, I mean fight and worry. I hit closed doors more than open ones. Now that could change any day... but for arguments sake speaking for today, it stinks.
Back to the Angioma... this lesion as it is referred to, has grown in the last 15 years more than 2.5 times it's size. I don't know if it plans on stopping or not. It has bled (or oozed) a few times, which can cause anywhere from a headache to numbness to dizziness, possibly paralysis, or coma. These are the facts that I know. What I don't know is when this could happen, or what causes it to happen.
Now... let's play the devils advocate... do any of us really know? Do any of us really know what will be our demise. No, and given the chance to find out... very, very few of us would want to know. Most of us want to go on through life, doing our thing, and be hit between the eyes with it at some point. However, most of us want the opportunity to avoid that fate...with diet, exercise, avoiding bad habits like smoking, sky diving... (just kidding I just threw that in to see if you were paying attention....I am not putting a bad light on sky diving...) However... my fellow stemmies and I don't have a clue. We are flying by the seat of our pants so to speak. In fact I have been since 1995. Today, I am saying, ENOUGH. Today I am saying, I may know that I theoretically have a ticking time bomb in my head, and not knowing when it will or how it will go off, or what I will be doing... or what I will do to make it happen, has gone on long enough. I can't do it all anymore. Quite honestly, I don't want to. Don't take this the wrong way... I am not looking to end it all.. I just want some help.
The dizziness I experience on a daily basis, the intermittent nausea, the insecure feeling I get in public add to that the chore of getting up every morning, fighting the traffic, dealing with piss pour personalities (that is if there is a personality at all), the aggravation of being told I just am not good enough, and then, when we are we are "rewarded" with a Hamburger, or a T-Shirt, then the daily chores associated with a family (that is right... I have no children, but I do have a family that I care for, and nurture, and worry about...!), are really a lot to handle.
What I really dread are the looks from people, the disappointed, disapproving looks. 'Poor dear, she is giving up...' Or... 'She wants to be supported by the system... what does she think... this is Sweden?' (If only this were Sweden...)
I know I look like everything is fine... but take my word for it... it isn't. Most of my day it is overwhelming. It is all consuming. I have fought the good fight, and I am not raising a white flag... I am asking for reinforcement!
Sunday, October 17, 2010
Yesterday we went to a wedding...
This is the first time I have gone to a function while not seeing correctly. Actually, now that I think back it isn't the first time, but it is the first time since I have not had the ability to see clearly, and after I have made mistakes, like tripping and falling on my face and giving myself bruises. (Which I did this past week... complete with bloody nose, and bruising including black eyes, and I think my nose was a little bit swollen.)
Now I took this spill in my own house, and was not about to do it on the steps to the church, or in the reception hall. So I was always asking George to take my hand, or wait for me... and I felt like a real invalid. On top of that I had my Mom to worry about. I must have been a real sight...
I didn't get up to dance, I just sat in my seat, at the table. In fact all 3 of us did. I occasionally got up to get soda for Mom and I, or a cup of coffee for Mom and I. I didn't have any wine with dinner.
It was a nice party though, and it was good seeing everyone dancing and having a good time.
However it brought everything home, that this is not exactly a fun thing. I am not sitting back looking forward to a lifetime of leisure. Well it may be leisurely spent, but not in the same respect as everyone would think.
Not going to whine today I promise. I am going to try and do something constructive, like vacuum the family room, maybe dust. That will be about it. I do better at home as far as the dizziness. I think some of it might be stress, (and don't roll your eyes! I am not over using the word... I am simply trying to describe what one feels when they aren't in familiar surroundings, or have too much stimulation around them. Add to that feeling like there are demands on me, no matter how small...at the same time.)
So that all being said, have a nice Sunday. The weather here now is beautiful! Maybe it will stay like that a few more days.
Saturday, October 16, 2010
Ok...
...so I found out that there is nothing I can do about my job. If they want to fire me they can... there is nothing legally saying that they have to save my job for me. Not that they won't, but, not that they will... It is totally up to them and their "business plan".
Now there are some that would say..."well of course!!! Business is in the business to make money, not lose money, and you supposedly made money for them, and now you aren't...now you are costing them money." Ok.. I can understand that... I can understand that for 16 years I was apparently represented positive cash flow for them, or who ever they were at the time... since they changed names a few times down the road. I was a good employee, in the sense that I didn't cost them any money. I didn't create a problem, I did my work and then some, and I was no trouble. And I would still be today, and I still am today... but I can't complete my job, meet the objectives that make me an asset to the company. And... I don't know that I will be able to again.
Now that is also not mentioning that the past 3 years or so it has become increasing evident to me that I was becoming less and less of an asset to the company. I have been told that my work is just satisfactory, as opposed to stellar. I was just barely meeting my objectives in productivity, and with in the last year, I was told that I was paid too much money, 25% too much as a matter of fact. At another time I was told that my salary may be adjusted according to the overage, and I would have two choices, take it and deal with it, or take a package, and say good bye. That is in this wonderful job market of 9 1/2% unemployment. Add to that fact I am 52 years old, and have a "thing" in my head... or I am a stemmie (I love that, sounds better than thing in my head)
So add to that the fact that I can't do my job, and that I have a doctor who said that we will have to talk about disability before he said that he can't disable me...
So I ask you where does that leave me... See just like the company that I worked for is not in business for me to cost them money... I was not working all these 45 years to end up a pauper, homeless, losing everything I ever had or worked for, with nothing to show for it. Feasibly, that is what could happen to me. And you know what... sorry all you self righteous, pious yahoos... I really don't care about my companies business plan. I care about feeding my family.
You know those Atty,'s that everyone complains about.... well the very people that everyone finds fault with, are the very people necessary to make sure people don't lose their houses and go on food stamps.
So what is a person to do...someone explain that to me...I really want to know... I wake up everyday, and wonder if this is the day I will be better...and then I wonder to what end...!
My days of being an asset are over... I have officially, I guess, become a liability....
We know what happens to liabilities...
Now there are some that would say..."well of course!!! Business is in the business to make money, not lose money, and you supposedly made money for them, and now you aren't...now you are costing them money." Ok.. I can understand that... I can understand that for 16 years I was apparently represented positive cash flow for them, or who ever they were at the time... since they changed names a few times down the road. I was a good employee, in the sense that I didn't cost them any money. I didn't create a problem, I did my work and then some, and I was no trouble. And I would still be today, and I still am today... but I can't complete my job, meet the objectives that make me an asset to the company. And... I don't know that I will be able to again.
Now that is also not mentioning that the past 3 years or so it has become increasing evident to me that I was becoming less and less of an asset to the company. I have been told that my work is just satisfactory, as opposed to stellar. I was just barely meeting my objectives in productivity, and with in the last year, I was told that I was paid too much money, 25% too much as a matter of fact. At another time I was told that my salary may be adjusted according to the overage, and I would have two choices, take it and deal with it, or take a package, and say good bye. That is in this wonderful job market of 9 1/2% unemployment. Add to that fact I am 52 years old, and have a "thing" in my head... or I am a stemmie (I love that, sounds better than thing in my head)
So add to that the fact that I can't do my job, and that I have a doctor who said that we will have to talk about disability before he said that he can't disable me...
So I ask you where does that leave me... See just like the company that I worked for is not in business for me to cost them money... I was not working all these 45 years to end up a pauper, homeless, losing everything I ever had or worked for, with nothing to show for it. Feasibly, that is what could happen to me. And you know what... sorry all you self righteous, pious yahoos... I really don't care about my companies business plan. I care about feeding my family.
You know those Atty,'s that everyone complains about.... well the very people that everyone finds fault with, are the very people necessary to make sure people don't lose their houses and go on food stamps.
So what is a person to do...someone explain that to me...I really want to know... I wake up everyday, and wonder if this is the day I will be better...and then I wonder to what end...!
My days of being an asset are over... I have officially, I guess, become a liability....
We know what happens to liabilities...
Wednesday, October 13, 2010
I have been obsessed...
.. since last night, when they brought that first miner up in Chile...
My husband doesn't understand how I can watch this so closely, I don't know how he can't... but either way.. the bigger question I have is why can't the mine disasters in our country have the same outcome. No one had addressed that... Why don't the few rescued miners that we do have come out in good shape as these guys do... Am I falling prey to propaganda? I don't think so. I think my questions are not being answered on purpose...and I want to know with all the coverage on CNN, why hasn't that been addressed, asked or answered?
Is it because the mine in Chile, is government owned, and the mines here are privately owned? Could it be that the miners in Chile (one was Bolivian) were in better condition health wise...than the miners in this country? If so why... and shouldn't we be using this as a learning experience. All the way around...?
These are questions I have, I don't know the answers. I don't know the answers to any of the questions... I don't care about anything the experts are saying...the psychologists, Dr. Gupta ... I just care about that they are coming out, and are safe... The rest will be what it will be...
Either way... Viva Chile... Congratulations, I can only hope that this wonderful story will be the first of all the rest... and we never have another mine DISASTER anywhere, ever again.
My husband doesn't understand how I can watch this so closely, I don't know how he can't... but either way.. the bigger question I have is why can't the mine disasters in our country have the same outcome. No one had addressed that... Why don't the few rescued miners that we do have come out in good shape as these guys do... Am I falling prey to propaganda? I don't think so. I think my questions are not being answered on purpose...and I want to know with all the coverage on CNN, why hasn't that been addressed, asked or answered?
Is it because the mine in Chile, is government owned, and the mines here are privately owned? Could it be that the miners in Chile (one was Bolivian) were in better condition health wise...than the miners in this country? If so why... and shouldn't we be using this as a learning experience. All the way around...?
These are questions I have, I don't know the answers. I don't know the answers to any of the questions... I don't care about anything the experts are saying...the psychologists, Dr. Gupta ... I just care about that they are coming out, and are safe... The rest will be what it will be...
Either way... Viva Chile... Congratulations, I can only hope that this wonderful story will be the first of all the rest... and we never have another mine DISASTER anywhere, ever again.
Sunday, October 10, 2010
Mr. Toads Wild Ride
Today I went bicycle riding... first time in about a year, first time since my latest bout with dizziness... (Dizziness... did I ever elaborate on that... It isn't dizzy like everything is going around in circles, like you see on television...it is like everything is jumping...unless I keep my head perfectly still.) Now let me add that I have done some serious bicycle riding in my late 20's and mid 30's and early 40's. I don't mean like a few blocks, I mean like 60 mile a day...camping at night, then riding again the same the next day. It was fun, and I was good... Of course as I got older it was less intense, but... bottom line, I am no stranger to bicycle riding...) Well it was pretty wild.
I remember when I was in Germany with my cousin, and we would find a few bicycles (Once we mistakenly took one of my Uncles workers bikes by accident) and so my Grandmother (Oma) decided to ride with us... now mind you she was in her late 70's, early 80's. and we were amazed because she was winding and all over the road. The reason I tell that story is because that is how I was today. Curbs, telephone poles, the point where the sidewalk hits the grass... all of those things became obstacles for me... and do you think I hit the brakes... Nope, I did stop pedaling... but I think I was my Oma for a few minutes there. The only difference is I wasn't telling my husband to watch where he was going...
I mentioned that my husband had a stroke, well up until not to long ago, (within a year) he would talk about things not feeling real around him... I couldn't understand that. But now I do... Thinking back on our little jaunt on the bicycle... it doesn't seem like it really happened... I know it happened, and I know where it happened, and I know that I went along with it, wanted to do it... put air in the tires, made sure the helmet was on correctly, and tight, but I think my vision, the way things look to me have an affect on my perception of things.
For the past 4 months I have been trying to do things around the house... Mostly the only thing I am successful at is making the bed and cleaning out the litter box. Well, unloading the dishwasher and putting things away, I miss the counter, hit the trim on the cabinets, bang my head a lot, can't seem to get a feel for where things are around me.... Possibly because I walk around squinting or with one eye closed in order to see things clearly. But nothing has been like this bicycle ride. This was Mr. Toads Wild Ride for sure.
But I am sure that it will have no bearing on anything. After all, I don't ride my bicycle to work, or for work, I sit at a desk and type orders, and answer the phone. No reason why I shouldn't be able to do that...
What, what is that you say... the other stuff that a person does in life... Hmmpf... don't look for society to worry about that... that is your problem. But when things get out of control, and you can't do the maintenance on your home, and care for your Mother, or care for your family...well then we will put you on Dr. Phil or reality TV, and see if they can help you... and someone will rake in the bucks from the sponsors, and you will be the talk around the water cooler and at the lunch table... What more do you want out of life...?
Mr. Toads Wild Ride...yup.... Mr. Toads Wild Ride....
I remember when I was in Germany with my cousin, and we would find a few bicycles (Once we mistakenly took one of my Uncles workers bikes by accident) and so my Grandmother (Oma) decided to ride with us... now mind you she was in her late 70's, early 80's. and we were amazed because she was winding and all over the road. The reason I tell that story is because that is how I was today. Curbs, telephone poles, the point where the sidewalk hits the grass... all of those things became obstacles for me... and do you think I hit the brakes... Nope, I did stop pedaling... but I think I was my Oma for a few minutes there. The only difference is I wasn't telling my husband to watch where he was going...
I mentioned that my husband had a stroke, well up until not to long ago, (within a year) he would talk about things not feeling real around him... I couldn't understand that. But now I do... Thinking back on our little jaunt on the bicycle... it doesn't seem like it really happened... I know it happened, and I know where it happened, and I know that I went along with it, wanted to do it... put air in the tires, made sure the helmet was on correctly, and tight, but I think my vision, the way things look to me have an affect on my perception of things.
For the past 4 months I have been trying to do things around the house... Mostly the only thing I am successful at is making the bed and cleaning out the litter box. Well, unloading the dishwasher and putting things away, I miss the counter, hit the trim on the cabinets, bang my head a lot, can't seem to get a feel for where things are around me.... Possibly because I walk around squinting or with one eye closed in order to see things clearly. But nothing has been like this bicycle ride. This was Mr. Toads Wild Ride for sure.
But I am sure that it will have no bearing on anything. After all, I don't ride my bicycle to work, or for work, I sit at a desk and type orders, and answer the phone. No reason why I shouldn't be able to do that...
What, what is that you say... the other stuff that a person does in life... Hmmpf... don't look for society to worry about that... that is your problem. But when things get out of control, and you can't do the maintenance on your home, and care for your Mother, or care for your family...well then we will put you on Dr. Phil or reality TV, and see if they can help you... and someone will rake in the bucks from the sponsors, and you will be the talk around the water cooler and at the lunch table... What more do you want out of life...?
Mr. Toads Wild Ride...yup.... Mr. Toads Wild Ride....
Saturday, October 09, 2010
If if looks like a duck, then it must be a duck...
I have been thinking lately. Of course I would it is election time, and for what it is worth, I will be casting my vote for my elected officials, most of whom, because of where I live, and who I vote for will not win on November 2nd.
I watched a debate Wednesday night, with the 3 gentleman running for the open Senate seat here in Florida. They are Charlie Crist, our current Governor. Marco Rubio, I believe he is currently the speaker of the house in the State Legislature in Florida. Not sure what part of the state he is from. Lastly, and the person I will vote for is Kendrick Meek, currently a Congressman, a Federal Congressman in Florida. Now Crist is a newly turned Independent, used to be a conservative Republican, or so he said he was..., Rubio, is a Conservative Republican/Teabagger, and Mr. Meek is a Democrat. Has always been a Democrat.
There was a lot of talk about Seniors, and taking away Social Security, and privatization, and so on... And phrases like pulling the rug out from under, going back on a promise, so on and so forth.
Well as you are probably aware, I have a brain injury, or a condition called an Angioma, or Cerebral Cavernous Malformation, and I am lovingly considered a "Stemmie" ( I love that!) because these little clusters of blood vessels can be anywhere on your brain. I am the proud owner of three. One on my brain stem (hence the name Stemmie) and two small ones on my cerebellum, which are supposed to be inactive... That means they are small, not doing anything right now. The one on my brain stem however has grown from 6mm to 15 mm since 2006.
Now I have known of the one on my brain stem since 1995. Found it by accident, and conveniently stuck my head in the sand, mainly because there wasn't anything else I could do, since the medical professionals around pretty much did the same. Not sure if that is because they didn't know what else to do, or... I didn't seem to offer any more information. Personally I don't think it was the latter. I have since found out that I should not be taking any aspirin products, since that could make these things ooze or bleed.
Well anyway... water under the bridge so to speak. In 2005 it gave me trouble, and then in about 3 months it was better, and I went back to work. Then in late in 2007 it started acting up, and my Doctor at the time suggested anti-depressants. I declined and told him that wasn't my problem, and made arrangements at work, and continued to work until June of this year. June 2010, I decided that it was getting too hard to drive, concentrate, unsuccessfully trying to maintain a 100% productivity level at work, while being told that I was paid 25% too much, and I don't even want to discuss the egos that I had to deal with... And on top of that I live in a house that is over 2000 square feet, I have my 86 year old Mother, and my Husband, that is 3 years post a debilitating stroke, all, everyone depends on me...
So my GP ordered another MRI, and that is when I found out that this "thing" in my head more than doubled in size.
Now this is my dilemma...It is my understanding that I can't collect my pension from work on a disability, because I am not technically disabled. I am not sure who it is exactly made that determination. But that is the case. This was further proven when I tried calling some Attorneys to see if they could direct me, and I was told that I was lucky to still have a job. Now mind you that was not the information I asked for, nor was it given graciously, and that was the Florida Bar Association.
See based on the chatter from the debate, and people I talk to, family and friends, it seems that I guess I am not doing my part in the economy if I am not working. I am not paying taxes, I am not paying FICA, etc. It would seem to me that I am just wanting to (not yet, but wanting to) sponge off the system, the system being society. Can't means Won't and all that kind of rubbish. The bottom line is my vision goes double, especially when I have to look from one area to another, scan, move. My typing is labored, since I often hit the wrong keys, mainly because I don't look at the keyboard, and find that me fingers are often not on the 'home" keys or that I tend to over reach for letters. I do manage to care for my house, perhaps one room at a time, since too much activity tires me out tremendously. For instance, having a doctors appointment early in the day, say 9:00, tires me out to where I need a couple of hours of a nap. I am here to tell you, I never, ever took naps.
However, if you look at me, other than I tend to squint, or close one eye, you wouldn't thingk anything was wrong with me. Oh and to add to that I asked my Neurosurgeon (because he told me I couldn't be considered disabled) if there were any tests to determine my visual disability, he said no.
So I guess if I am not laid up in a bed, have the use of my limbs, albeit, limited. I look normal than I must be normal. Well I am here to tell you that I am not normal... I can't see, I can't safely drive, I constantly have to work at focusing my eyes, and that tires me out, which causes me to work much slower. I am 52 years old. My patience level is no where close to where it was. I feel incapable of doing what I once did.
Now add to this that this Angioma is a ticking time bomb. At anytime, for any reason, it could turn me into a drooling, imbecile. Anytime, with out warning, really. It could happen in my sleep, like the Olympic Sprinter Florence Griffith Joyner. Or, I might be struck down by something else.
But there is one thing for sure... I can go out to work, and do my part for society..., no matter what it means... Just like I have been doing for the past 45 years. Everyday, with no more than 8 weeks break... in 45 years. 45 years I have been paying into the system, to help support those that have done their part, or couldn't do their part anymore.
If if looks like a duck...then it must be a duck...
I watched a debate Wednesday night, with the 3 gentleman running for the open Senate seat here in Florida. They are Charlie Crist, our current Governor. Marco Rubio, I believe he is currently the speaker of the house in the State Legislature in Florida. Not sure what part of the state he is from. Lastly, and the person I will vote for is Kendrick Meek, currently a Congressman, a Federal Congressman in Florida. Now Crist is a newly turned Independent, used to be a conservative Republican, or so he said he was..., Rubio, is a Conservative Republican/Teabagger, and Mr. Meek is a Democrat. Has always been a Democrat.
There was a lot of talk about Seniors, and taking away Social Security, and privatization, and so on... And phrases like pulling the rug out from under, going back on a promise, so on and so forth.
Well as you are probably aware, I have a brain injury, or a condition called an Angioma, or Cerebral Cavernous Malformation, and I am lovingly considered a "Stemmie" ( I love that!) because these little clusters of blood vessels can be anywhere on your brain. I am the proud owner of three. One on my brain stem (hence the name Stemmie) and two small ones on my cerebellum, which are supposed to be inactive... That means they are small, not doing anything right now. The one on my brain stem however has grown from 6mm to 15 mm since 2006.
Now I have known of the one on my brain stem since 1995. Found it by accident, and conveniently stuck my head in the sand, mainly because there wasn't anything else I could do, since the medical professionals around pretty much did the same. Not sure if that is because they didn't know what else to do, or... I didn't seem to offer any more information. Personally I don't think it was the latter. I have since found out that I should not be taking any aspirin products, since that could make these things ooze or bleed.
Well anyway... water under the bridge so to speak. In 2005 it gave me trouble, and then in about 3 months it was better, and I went back to work. Then in late in 2007 it started acting up, and my Doctor at the time suggested anti-depressants. I declined and told him that wasn't my problem, and made arrangements at work, and continued to work until June of this year. June 2010, I decided that it was getting too hard to drive, concentrate, unsuccessfully trying to maintain a 100% productivity level at work, while being told that I was paid 25% too much, and I don't even want to discuss the egos that I had to deal with... And on top of that I live in a house that is over 2000 square feet, I have my 86 year old Mother, and my Husband, that is 3 years post a debilitating stroke, all, everyone depends on me...
So my GP ordered another MRI, and that is when I found out that this "thing" in my head more than doubled in size.
Now this is my dilemma...It is my understanding that I can't collect my pension from work on a disability, because I am not technically disabled. I am not sure who it is exactly made that determination. But that is the case. This was further proven when I tried calling some Attorneys to see if they could direct me, and I was told that I was lucky to still have a job. Now mind you that was not the information I asked for, nor was it given graciously, and that was the Florida Bar Association.
See based on the chatter from the debate, and people I talk to, family and friends, it seems that I guess I am not doing my part in the economy if I am not working. I am not paying taxes, I am not paying FICA, etc. It would seem to me that I am just wanting to (not yet, but wanting to) sponge off the system, the system being society. Can't means Won't and all that kind of rubbish. The bottom line is my vision goes double, especially when I have to look from one area to another, scan, move. My typing is labored, since I often hit the wrong keys, mainly because I don't look at the keyboard, and find that me fingers are often not on the 'home" keys or that I tend to over reach for letters. I do manage to care for my house, perhaps one room at a time, since too much activity tires me out tremendously. For instance, having a doctors appointment early in the day, say 9:00, tires me out to where I need a couple of hours of a nap. I am here to tell you, I never, ever took naps.
However, if you look at me, other than I tend to squint, or close one eye, you wouldn't thingk anything was wrong with me. Oh and to add to that I asked my Neurosurgeon (because he told me I couldn't be considered disabled) if there were any tests to determine my visual disability, he said no.
So I guess if I am not laid up in a bed, have the use of my limbs, albeit, limited. I look normal than I must be normal. Well I am here to tell you that I am not normal... I can't see, I can't safely drive, I constantly have to work at focusing my eyes, and that tires me out, which causes me to work much slower. I am 52 years old. My patience level is no where close to where it was. I feel incapable of doing what I once did.
Now add to this that this Angioma is a ticking time bomb. At anytime, for any reason, it could turn me into a drooling, imbecile. Anytime, with out warning, really. It could happen in my sleep, like the Olympic Sprinter Florence Griffith Joyner. Or, I might be struck down by something else.
But there is one thing for sure... I can go out to work, and do my part for society..., no matter what it means... Just like I have been doing for the past 45 years. Everyday, with no more than 8 weeks break... in 45 years. 45 years I have been paying into the system, to help support those that have done their part, or couldn't do their part anymore.
If if looks like a duck...then it must be a duck...
Friday, October 08, 2010
Website for the US Senate Committee on Health Education Labor and Pensions.
This is the link for the Senate Committee: http://help.senate.gov/
And here is a link to a letter. Now this is an old letter from the old bill that was postponed this year 2010, but it is good information.
http://www.angiomaalliance.org/pages.aspx?content=353
I really want to do this, and if I had some help... well, that would be wonderful...
I may not be Michael J. Fox... but I think we should all work together for each other...
And here is a link to a letter. Now this is an old letter from the old bill that was postponed this year 2010, but it is good information.
http://www.angiomaalliance.org/pages.aspx?content=353
I really want to do this, and if I had some help... well, that would be wonderful...
I may not be Michael J. Fox... but I think we should all work together for each other...
I just found a blog this morning...
... and it was great. Click on the title of this post to go to her blog.
It is written by a 20 something who has been diagnosed with an Angioma, like me, and it is her take on her life, and how it has changed.
Hers is on her brain stem, just like me, and we have a name now (and I think it is so neat), "Stemmies".
Well anyway... as you can probably tell from my picture, I used to be heavily involved in politics. Not sure I mentioned it before, but it started in 2000, and it ended in about 2004/2005. Not very long you might say... but I was totally immersed in it. That is how I met my husband, and most of my friends. But it was done in my spare time...I have a full time job. That is another story.
So I was thinking... maybe I should use my knowledge, and limited connections, and bring these Angioma's to the fore front. You see there is a bill, #3684 or was a bill that was being introduced to the Senate Committee on Health, Education, Labor and Pensions, to fund a research center in New Mexico for a care center for Cavernous Angiomas.
Now for those that aren't familiar with Angiomas, do a Google search for "Ryan Westmoreland", or look at the blog I linked above. Or http://www.angiomaalliance.org/
In the mean time, I guess I will use this blog instead of just an on and off diary, that no one really reads or cares about... to a chronicle of my efforts to make my brain injury/neurological problem, better known, and not ignored out of convenience.
Angioma is not understood, it is often swept under the rug, and when you talk about it you get blank stares. That has been my experience. As much as I like my Neurosurgeon, and I think he is very good... to a certain extent, that is somewhat what my experience has been with him. The explanation from him and other Doctors has been, we just don't know what to do for you... (since mine is on my brain stem and inoperable).
Now I have sent my films and report to Dr. Spetzler in Az. at Barrow (that is where Ryan Westmoreland was, and Brett Michaels, albeit for a different problem), and Dr. Spetzlers office has called me to say that they can operate on me... I have given it some thought, and spoke to my Neurosurgeon about it.
The conclusion I came to was, at my age, with my charges (family, responsibilities, etc), that at this point my efforts and time would be best spent trying to make things better for those that come along behind me... Anybody who would like more of an explanation is free to ask for one.
So for now... I would like to do that. It is coming up on a new year, and that bill I spoke about earlier will be re-introduced. Well, introduced, since I think it was postponed before. It will probably have a different number. I live in Florida, and we have a freshman Senator coming up. I am going to keep my eyes open, maybe he will get on that committee, and maybe I will have someone to talk to about this. Or maybe I will have to do what I can in the mean time.
Stay Tuned to find out...
It is written by a 20 something who has been diagnosed with an Angioma, like me, and it is her take on her life, and how it has changed.
Hers is on her brain stem, just like me, and we have a name now (and I think it is so neat), "Stemmies".
Well anyway... as you can probably tell from my picture, I used to be heavily involved in politics. Not sure I mentioned it before, but it started in 2000, and it ended in about 2004/2005. Not very long you might say... but I was totally immersed in it. That is how I met my husband, and most of my friends. But it was done in my spare time...I have a full time job. That is another story.
So I was thinking... maybe I should use my knowledge, and limited connections, and bring these Angioma's to the fore front. You see there is a bill, #3684 or was a bill that was being introduced to the Senate Committee on Health, Education, Labor and Pensions, to fund a research center in New Mexico for a care center for Cavernous Angiomas.
Now for those that aren't familiar with Angiomas, do a Google search for "Ryan Westmoreland", or look at the blog I linked above. Or http://www.angiomaalliance.org/
In the mean time, I guess I will use this blog instead of just an on and off diary, that no one really reads or cares about... to a chronicle of my efforts to make my brain injury/neurological problem, better known, and not ignored out of convenience.
Angioma is not understood, it is often swept under the rug, and when you talk about it you get blank stares. That has been my experience. As much as I like my Neurosurgeon, and I think he is very good... to a certain extent, that is somewhat what my experience has been with him. The explanation from him and other Doctors has been, we just don't know what to do for you... (since mine is on my brain stem and inoperable).
Now I have sent my films and report to Dr. Spetzler in Az. at Barrow (that is where Ryan Westmoreland was, and Brett Michaels, albeit for a different problem), and Dr. Spetzlers office has called me to say that they can operate on me... I have given it some thought, and spoke to my Neurosurgeon about it.
The conclusion I came to was, at my age, with my charges (family, responsibilities, etc), that at this point my efforts and time would be best spent trying to make things better for those that come along behind me... Anybody who would like more of an explanation is free to ask for one.
So for now... I would like to do that. It is coming up on a new year, and that bill I spoke about earlier will be re-introduced. Well, introduced, since I think it was postponed before. It will probably have a different number. I live in Florida, and we have a freshman Senator coming up. I am going to keep my eyes open, maybe he will get on that committee, and maybe I will have someone to talk to about this. Or maybe I will have to do what I can in the mean time.
Stay Tuned to find out...
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