I feel at this point 2010 has only a few hours remaining. This year was tough but not as bad as 2009. In truth, I feel this entire decade has been rough on most people. 9/11 what a way to start the decade right?! I saw that in a vision before it happened and the only person I told was my then Fiancé (now husband). He knows that these things appear to me the most poignant being Dale Earnhardt. I knew/thought he was already dead in that crash, yet I was shocked that people were wearing his colors and excited about NASCAR I told my husband "I can't believe that there has not been anything on the news about Dale Earnhardt's death." (we lived just south of Daytona where NASCAR and the Daytona 500 are huge) I went to bed, then work the next day, the day of the 'big race'. Then as we all know he had that fatal accident. I came home after work and freaked out. I told my husband "I told you I'm psychic and this is proof".
I do this on occasion and most people don't believe me. Strangely I see images from the future that aren't pin pointed. I saw skyscrapers burning and collapsing. I saw smoke and ash like pulverized cement. (I know that smell and dust from remodeling houses) I could not say what I was seeing, I knew it was in the US though. Then when I saw it on the news I saw the exact same image that I had the vision of. A man jumping out of the skyscraper instead of burning. I saw it all. I had a feeling about the great earthquakes. I knew they'd be all over the globe but in more third world locations. I have this written in a post on the Cocteau forum. I may go back there and copy it to post here.
So I look to the past and find these tragedies, personal with my deteriorating health and more public like the Tsunami or the quake in Haiti. I feel sad like a witness to life and I ask myself what is the point of acquiring 'things'. There's no point in worrying, stress, sadness and on the other side there is no good point in personal human joys, judgments or pride. What matters is what you are inside. That is all that you have now, that is all that you'll have when you pass.
I am a spiritual person I know only the moment today. I do what I can and that is all that I need to do. Living with a chronic illness changed me. when I say me I mean the person I am inside. What my body does is not me just my body. I am sort of afraid to go on because I know the tongue will betray me. It's best to just project the point.
Before I sat down to write this on my blog, I got a call from my dad. My grandmother has just passed. This is my mother's mother. My mom was cremated and her ashes will be buried with my grandmother. This is bringing that back to me and it's sad, for me. They are off doing other things now, I am missing them. Funerals are for the living.
Friday, December 31, 2010
Saturday, December 4, 2010
As Seen on Face Book
"I haven't been to my blog recently, I've been too sick. I find it's easy to simply click on the games no typing required. Even the games, at times, are too much. I've had a cold, detoxing from my infusion, the activities such as checking in with friends, paying bills and cooking the occasional shoveling and now, I've got this horrible back ache and haven't been able to sleep because it is so painful. I guess I'm taking a time out. "
I do intend to recap all of the events from Seattle, My follow up with My Neurologist, My Yoga/Exercises, my work with the local MS Chapter, my attending class and of course all of the other daily business I've been up to.
I suppose I've been busy but I'm still trying to feel relaxation and recovery. I am not the type of person who needs all this stuff to keep me busy. I have things I'd prefer to do like relaxing and listening to music. The fun of crafts like quilting or photography.
Now the sunset is around 3:30 or so and it is pitch black around then. The sunrise opens the day at around 5:30 I think. With total cloud coverage the fullness of the sunlight only lasts from around 0900hrs (9am) to around 1500hrs (3pm) Military time makes it more obvious how brief that is. I see why people get the winter seasonal affective disorder (S.A.D.s). This is life up north though.
Me, I'm not affected by it, I have always been a night person anyway. What depresses me is stores closing up around 4pm. I think they are afraid to be out at night. This forces me to be a day person, which I am not. It is times like this that I miss living in places like Ft.Lauderdale, the city was never dark and never closed it's doors as early as 4pm.
Whatever....:P
I do intend to recap all of the events from Seattle, My follow up with My Neurologist, My Yoga/Exercises, my work with the local MS Chapter, my attending class and of course all of the other daily business I've been up to.
I suppose I've been busy but I'm still trying to feel relaxation and recovery. I am not the type of person who needs all this stuff to keep me busy. I have things I'd prefer to do like relaxing and listening to music. The fun of crafts like quilting or photography.
Now the sunset is around 3:30 or so and it is pitch black around then. The sunrise opens the day at around 5:30 I think. With total cloud coverage the fullness of the sunlight only lasts from around 0900hrs (9am) to around 1500hrs (3pm) Military time makes it more obvious how brief that is. I see why people get the winter seasonal affective disorder (S.A.D.s). This is life up north though.
Me, I'm not affected by it, I have always been a night person anyway. What depresses me is stores closing up around 4pm. I think they are afraid to be out at night. This forces me to be a day person, which I am not. It is times like this that I miss living in places like Ft.Lauderdale, the city was never dark and never closed it's doors as early as 4pm.
Whatever....:P
Tuesday, November 16, 2010
insomnia
that's it...it's 6:30 and I gotta get up and out by noon. uuuuggghhh and my doctor won't have another available appointment until December 17th.
Tuesday, November 9, 2010
Now here is an update....
Well, after writing the latest blog entry and also writing another blogesque (I just made up that word gang so add it to your dictionaries it's sort of like burlesque or Abba-esque if you will)
I realized immediately after writing the words, I sound a little depressed. Nothing like suicidal thoughts or wanting to hurt myself, family or friends. I am just painting the picture as I see it. Like it or not, sometimes coffee smells good but it has a bitter or acidic taste. I hope you catch my meaning.
I haven't been approached upfront about it, but, I can tell the vibe is out there with the surge of comments such as, "Remember you are loved" and "I'm here if you need to talk". I should play into it and see how far I can take things. I knew a kid that did it and there were no warning signs.I think the fact that I am so obviously writing about depressing things and really honestly embracing and exploring those feelings is a sure sign that I am not suicidal. I'm sad definitely depressed sure that's what the antidepressants are for. I think most of all it has to do with the fact that time keeps passing by and that is frustrating. My birthday has come and gone without anything monumental to speak of other than doctor's appointments, M.R. Images and things of that nature.
Except for one glimmering new thing...one sliver of tinsel to catch my attention.(that's right I'm coining phrases and making up words...Jealous?!) That is the fact that I've been working with this personal yoga instructor at a much slower pace than the average even beginner level. It has been great an manageable. She and I had the conception to have a MS group class then lo and behold things rapidly fell into place. We are having our first session tomorrow. This is something to look forward to I have a feeling this will be more popular than we first thought it would be that's because I'd starting getting inquiries on the first day the memo went out. That's fast for people with MS. I've gotten the local MS Society on board, the Yoga Studio, the Local Senior Center where it will take place as well as the local Neurology Clinic with their nurses and the hospital too. All of which have had such nice things to say about this to me telling me that this is so important for MS patients to stay active. I've spoken with one of the pharmaceutical suppliers Biogen Idec who is also glad to hear about this and telling me to keep up the good work. I wasn't looking for a pat on the back I just wanted to get some good questions to ask the group of MS patients tomorrow. Well, I think I did but..I'll let the instructor play it by ear. It's her gig I've just done some of the footwork.
She and I have attributed it all to God's plan. The activity planner at the Senior Center used to be my neighbor. I've had a lot of experience working with people, setting up parties with the Body Shop as well as making flyer's for friends bands back in the day, making spreadsheets and understanding certain legal loopholes to avoid with things which may involve Dr.'s Consent like this. I have brought all this to the table and my taking the time to put this together carefully and keeping an open line of communication with all parties will allow this to go off without a hitch. 8)
So No, I'm not suicidal by any measure. Depressed, yes, wouldn't you be if even just waling out in the yard fatigues you. I'm amazed that I've been able to type all of this out of course it has been done in the span of around 3 hours. Lots of breaks and I love the Spell-checker.
Das ist alles.(Deutsch) or S-O-C-K-S if you habla Espagnol
That Is All
I realized immediately after writing the words, I sound a little depressed. Nothing like suicidal thoughts or wanting to hurt myself, family or friends. I am just painting the picture as I see it. Like it or not, sometimes coffee smells good but it has a bitter or acidic taste. I hope you catch my meaning.
I haven't been approached upfront about it, but, I can tell the vibe is out there with the surge of comments such as, "Remember you are loved" and "I'm here if you need to talk". I should play into it and see how far I can take things. I knew a kid that did it and there were no warning signs.I think the fact that I am so obviously writing about depressing things and really honestly embracing and exploring those feelings is a sure sign that I am not suicidal. I'm sad definitely depressed sure that's what the antidepressants are for. I think most of all it has to do with the fact that time keeps passing by and that is frustrating. My birthday has come and gone without anything monumental to speak of other than doctor's appointments, M.R. Images and things of that nature.
Except for one glimmering new thing...one sliver of tinsel to catch my attention.(that's right I'm coining phrases and making up words...Jealous?!) That is the fact that I've been working with this personal yoga instructor at a much slower pace than the average even beginner level. It has been great an manageable. She and I had the conception to have a MS group class then lo and behold things rapidly fell into place. We are having our first session tomorrow. This is something to look forward to I have a feeling this will be more popular than we first thought it would be that's because I'd starting getting inquiries on the first day the memo went out. That's fast for people with MS. I've gotten the local MS Society on board, the Yoga Studio, the Local Senior Center where it will take place as well as the local Neurology Clinic with their nurses and the hospital too. All of which have had such nice things to say about this to me telling me that this is so important for MS patients to stay active. I've spoken with one of the pharmaceutical suppliers Biogen Idec who is also glad to hear about this and telling me to keep up the good work. I wasn't looking for a pat on the back I just wanted to get some good questions to ask the group of MS patients tomorrow. Well, I think I did but..I'll let the instructor play it by ear. It's her gig I've just done some of the footwork.
She and I have attributed it all to God's plan. The activity planner at the Senior Center used to be my neighbor. I've had a lot of experience working with people, setting up parties with the Body Shop as well as making flyer's for friends bands back in the day, making spreadsheets and understanding certain legal loopholes to avoid with things which may involve Dr.'s Consent like this. I have brought all this to the table and my taking the time to put this together carefully and keeping an open line of communication with all parties will allow this to go off without a hitch. 8)
So No, I'm not suicidal by any measure. Depressed, yes, wouldn't you be if even just waling out in the yard fatigues you. I'm amazed that I've been able to type all of this out of course it has been done in the span of around 3 hours. Lots of breaks and I love the Spell-checker.
Das ist alles.(Deutsch) or S-O-C-K-S if you habla Espagnol
That Is All
Sunday, November 7, 2010
It's my birthday....right?!
So, it's my birthday....at least that's what the calendar says. I have had so much going on these past few weeks not to mention the year and heck...the whole decade.
Ten years ago I was in my hey day, enjoying the fruits of labor and loving life. I was active in all aspects of my life and nothing could get me down...nothing could hold me back..I was a free spirit and truly embracing it.
Ten years later, I'm hardly that person anymore. I'm more of a cynic than I ever thought I could be. The whole purpose of life is to kill you. If not physically it will kill you on an emotional level. Life tapers down until you're beaten. One of the guarantees in life is death. (the other is taxes)
So why celebrate? None of this matters. Worries don't matter, stress doesn't matter in the end even taxes won't matter. The only thing left is death.
Screw the cake with candles, forget the gifts that will inevitably end up collecting dust. Don't send me money because as you know it will be taxed. Hold on to the memories of your hey day and be glad that you had them in the first place.
Ten years ago I was in my hey day, enjoying the fruits of labor and loving life. I was active in all aspects of my life and nothing could get me down...nothing could hold me back..I was a free spirit and truly embracing it.
Ten years later, I'm hardly that person anymore. I'm more of a cynic than I ever thought I could be. The whole purpose of life is to kill you. If not physically it will kill you on an emotional level. Life tapers down until you're beaten. One of the guarantees in life is death. (the other is taxes)
So why celebrate? None of this matters. Worries don't matter, stress doesn't matter in the end even taxes won't matter. The only thing left is death.
Screw the cake with candles, forget the gifts that will inevitably end up collecting dust. Don't send me money because as you know it will be taxed. Hold on to the memories of your hey day and be glad that you had them in the first place.
Wednesday, October 20, 2010
My MS, New OS and other recent news
So, my DH (dear husband) came to me with the option to wipe my OS and do a clean install of this new and wonderful system called Ubuntu.
It's great but I had to say goodbye to all of the music files and playlists I'd just transferred from my laptop. No big deal, the important things I own actual Cd's purchased at music stores. It's a pain because Ubuntu isn't compatible with Windows so the file sharing option doesn't work.
I've been digging out my Cd's and copying them to the music player. I get to enjoy the album art again and in doing so it's a lot like a step back in time for me. I remember buying the albums and wrestling with the packaging.
I have also been learning this new OS and it is a lot more sophisticated than windows. It's like a clean-matter-of-fact and to the point way of computing. I suppose that's why I like it.
As for my MS well, earlier this month I was due to have my infusion and yet again it was delayed. This time it was thanks to my honesty and talkativeness. I was asked about what I've been doing in my spare time etc... I shared how my Internet was down so I played Skip Bo on my PC. I love that simple child game much like my Rubik's Cubes. So when I'd first started up I'd forgotten that the person with the 1 card was the only one who could get it started. This forgetfulness went away immediately. This was the same nurse who said I was hearing voices, by the way. Both times she successfully stopped my much needed infusion.
Next time there will be NO smalltalk and NO inkling of any changes in my health no matter what. She wants to be a doctor I guess, she needs to learn the nuances of MS. Once bitten Twice shy and the third time meh. I'd rather become bedridden with an actual serious condition than to allow her to toy with my well being and livelihood.
Moving on. I had fun on the third Friday of the month, that's the local MS chapter's Monthly Meeting. I stupidly listened to another person, that will remain nameless, about the meetings. I was told they'd stopped. Either it was a lie or disinformation. Moving on again, I know now when and where in fact, it's where this girl I know works. She used to be my neighbor and has since moved into a newer house. I met these great women and it's exactly the type of people I've needed in my life.
I've also added a new friend to my life who has not only helped me out but I'm hoping that I can be there for her just as much.
I know that God has stepped in and answered my prayers.
Tomorrow I'm going to get a call from my Neurologist about my MRI I had on Monday, I'm pretty sure that I'll be getting my infusion by the end of the week. :)
I'll let you know.
-nan
It's great but I had to say goodbye to all of the music files and playlists I'd just transferred from my laptop. No big deal, the important things I own actual Cd's purchased at music stores. It's a pain because Ubuntu isn't compatible with Windows so the file sharing option doesn't work.
I've been digging out my Cd's and copying them to the music player. I get to enjoy the album art again and in doing so it's a lot like a step back in time for me. I remember buying the albums and wrestling with the packaging.
I have also been learning this new OS and it is a lot more sophisticated than windows. It's like a clean-matter-of-fact and to the point way of computing. I suppose that's why I like it.
As for my MS well, earlier this month I was due to have my infusion and yet again it was delayed. This time it was thanks to my honesty and talkativeness. I was asked about what I've been doing in my spare time etc... I shared how my Internet was down so I played Skip Bo on my PC. I love that simple child game much like my Rubik's Cubes. So when I'd first started up I'd forgotten that the person with the 1 card was the only one who could get it started. This forgetfulness went away immediately. This was the same nurse who said I was hearing voices, by the way. Both times she successfully stopped my much needed infusion.
Next time there will be NO smalltalk and NO inkling of any changes in my health no matter what. She wants to be a doctor I guess, she needs to learn the nuances of MS. Once bitten Twice shy and the third time meh. I'd rather become bedridden with an actual serious condition than to allow her to toy with my well being and livelihood.
Moving on. I had fun on the third Friday of the month, that's the local MS chapter's Monthly Meeting. I stupidly listened to another person, that will remain nameless, about the meetings. I was told they'd stopped. Either it was a lie or disinformation. Moving on again, I know now when and where in fact, it's where this girl I know works. She used to be my neighbor and has since moved into a newer house. I met these great women and it's exactly the type of people I've needed in my life.
I've also added a new friend to my life who has not only helped me out but I'm hoping that I can be there for her just as much.
I know that God has stepped in and answered my prayers.
Tomorrow I'm going to get a call from my Neurologist about my MRI I had on Monday, I'm pretty sure that I'll be getting my infusion by the end of the week. :)
I'll let you know.
-nan
Thursday, October 7, 2010
my role as an aspiring Child of God
4:39 AM 10/6/2010
After I had a conversation with my Dad the subject of hope came up, I feel the need to share; I want to try more not to get my hopes up, in fact I have ideas that I hope workout. I will strive to just go with the flow. When I get my hopes up and focus on what I want, it then by definition becomes selfish. I want to do what God wants, that is not selfish. Releasing my
burdens to God is such a relief. I'm aspiring to be a Child of God and maybe that aspiration
is also a defining trait of a true Child of God. I hope so, but again I don't want to just hope,I want to do.
I also don't want to get my hopes up, typically things don't work out to every minute detail I dream up. When the "hope/wish" doesn't pan out, (for reasons I don't need to know or even preoccupy myself with) I end up being sad, angry and even
depressed. I've asked myself "Why? Why not? Why me?" no-one is to blame for my emotions, but me.
I further thought about what things or situations and experiences was I hoping for?
Money, a new car, fancy clothes....? These are all things limited to earth. The Bible tells us not to collect materials here on earth. This is God's word, his message to us. When I
want the new fanciest gadget, that's not what a true Child of God desires. The scarry realization is that the devil has planted that seed in my mind. He's pointed my eyes to see the "greener grass". In reality, it just seems that way but the grass is equal and does no wrong. It's how it has been taken care of, if at all.
It's how it was planted, who has taken care of that yard and cultivated the soil?
The illusion of the grass being greener is just NOT seeing it for what it is, the labor it has taken to bring it to that level and still taking care of it, to continue for seasons to come.
Realizing that, I've tried to look to see what people have personally done and gone through to get that great new Audi TT or the beautiful house with the well manicured lawn in the best neighborhood. It sounds nice, getting these things though requires money, hard work and sacrifice.
Money, who cares it's meaningless. (See: Ecclesiastes 5:10-20)
Hard work, when you're working full time and even overtime you've sold your time, your life and truly your soul.
Sacrafice, it's just that. Giving yorself up for things. So Mr.Jones, I want you to realize that Audi TT can not fly you up to the gates of Heaven.
that's it for this installment- thanks for reading.
After I had a conversation with my Dad the subject of hope came up, I feel the need to share; I want to try more not to get my hopes up, in fact I have ideas that I hope workout. I will strive to just go with the flow. When I get my hopes up and focus on what I want, it then by definition becomes selfish. I want to do what God wants, that is not selfish. Releasing my
burdens to God is such a relief. I'm aspiring to be a Child of God and maybe that aspiration
is also a defining trait of a true Child of God. I hope so, but again I don't want to just hope,I want to do.
I also don't want to get my hopes up, typically things don't work out to every minute detail I dream up. When the "hope/wish" doesn't pan out, (for reasons I don't need to know or even preoccupy myself with) I end up being sad, angry and even
depressed. I've asked myself "Why? Why not? Why me?" no-one is to blame for my emotions, but me.
I further thought about what things or situations and experiences was I hoping for?
Money, a new car, fancy clothes....? These are all things limited to earth. The Bible tells us not to collect materials here on earth. This is God's word, his message to us. When I
want the new fanciest gadget, that's not what a true Child of God desires. The scarry realization is that the devil has planted that seed in my mind. He's pointed my eyes to see the "greener grass". In reality, it just seems that way but the grass is equal and does no wrong. It's how it has been taken care of, if at all.
It's how it was planted, who has taken care of that yard and cultivated the soil?
The illusion of the grass being greener is just NOT seeing it for what it is, the labor it has taken to bring it to that level and still taking care of it, to continue for seasons to come.
Realizing that, I've tried to look to see what people have personally done and gone through to get that great new Audi TT or the beautiful house with the well manicured lawn in the best neighborhood. It sounds nice, getting these things though requires money, hard work and sacrifice.
Money, who cares it's meaningless. (See: Ecclesiastes 5:10-20)
Hard work, when you're working full time and even overtime you've sold your time, your life and truly your soul.
Sacrafice, it's just that. Giving yorself up for things. So Mr.Jones, I want you to realize that Audi TT can not fly you up to the gates of Heaven.
that's it for this installment- thanks for reading.
Thursday, September 30, 2010
Where is September?
What the heck happened to September?!
I am not sure, time keeps going by and I do things. I take care of important things. I don't think I've missed any appointments or lapsed on any plans I've made. But what the heck....30 days hath September...that's it.
WELL today is the end and now begins the spiral into the chill of Autumn. I love the smells and the colors of Autumn. It is my favorite season because of the festivities of Thanksgiving friends and family coming together. The Christmas decorations and the people rushing around to get the best gift.
Then before we know it, Autumn's warmth and kinship melt into frantic distraction of Winter and time running out for Christmas Day then New Years and it's one flashing moment and crescendo into the final cacophony marking the end.
All is quiet on New Year's Day because after all of that frantic blast of events crammed into just a couple of months resembles a violent deathblow to the spirit. New Year's Day is sad and mourning for all of the joys that were temporarily programmed into our behaviors for two months.
They say it takes 28 days to break a habit but only 21 days to make a habit.
So come January 29th we should be out of our mourning and ready to start afresh. Then we can jump into the whole thing again starting with February 14th of course.
This is a great time of year....I love Autumn. :)
I am not sure, time keeps going by and I do things. I take care of important things. I don't think I've missed any appointments or lapsed on any plans I've made. But what the heck....30 days hath September...that's it.
WELL today is the end and now begins the spiral into the chill of Autumn. I love the smells and the colors of Autumn. It is my favorite season because of the festivities of Thanksgiving friends and family coming together. The Christmas decorations and the people rushing around to get the best gift.
Then before we know it, Autumn's warmth and kinship melt into frantic distraction of Winter and time running out for Christmas Day then New Years and it's one flashing moment and crescendo into the final cacophony marking the end.
All is quiet on New Year's Day because after all of that frantic blast of events crammed into just a couple of months resembles a violent deathblow to the spirit. New Year's Day is sad and mourning for all of the joys that were temporarily programmed into our behaviors for two months.
They say it takes 28 days to break a habit but only 21 days to make a habit.
So come January 29th we should be out of our mourning and ready to start afresh. Then we can jump into the whole thing again starting with February 14th of course.
This is a great time of year....I love Autumn. :)
Tuesday, September 21, 2010
09.20.2010
one handed typing b/c my kitty tactical is clutching me tightly it's cute Oh noes there she goes.
So, I slept all day today. I went to bed last night sometime around 9pm then got up today around 11am. I've been sneezing too but I think that's from all of this black mold that has formed in the kitchen. I wonder if that will be covered by our home owner's insurance. I'll call tomorrow. I also want to see if my dentist can say to the insurance company that it's a medical necessity for me to have my wisdom tooth extracted. It's impacted and I think at a point that it's finally emerging. I've noticed a bad odor when I brush and floss way back there. The hygienist said well that's from your impacted molar and you need to get it extracted then she said so long as it doesn't hurt, just keep it clean.
Now I think I know why some people have REALLY bad breath and now I'm scared that I'm one of those people. :(
If my insurance can be billed for this as a medical rather than a dental I might be able to have it covered.
My ophthalmologist gave me this idea because my most recent visit was billed as medical because I have MS and I have problems with my vision from it. YAY Doc.
So I have two calls to make tomorrow
Now I'm off to brush and floss...again.
So, I slept all day today. I went to bed last night sometime around 9pm then got up today around 11am. I've been sneezing too but I think that's from all of this black mold that has formed in the kitchen. I wonder if that will be covered by our home owner's insurance. I'll call tomorrow. I also want to see if my dentist can say to the insurance company that it's a medical necessity for me to have my wisdom tooth extracted. It's impacted and I think at a point that it's finally emerging. I've noticed a bad odor when I brush and floss way back there. The hygienist said well that's from your impacted molar and you need to get it extracted then she said so long as it doesn't hurt, just keep it clean.
Now I think I know why some people have REALLY bad breath and now I'm scared that I'm one of those people. :(
If my insurance can be billed for this as a medical rather than a dental I might be able to have it covered.
My ophthalmologist gave me this idea because my most recent visit was billed as medical because I have MS and I have problems with my vision from it. YAY Doc.
So I have two calls to make tomorrow
Now I'm off to brush and floss...again.
Friday, September 17, 2010
yoga & yogurt yo
So, I've started making yogurt again.
I was making it for years, that and my own flour, bread and baked goods as well as my own pasta and I juiced a lot of things.
During that time, which I lovingly refer to as my sort of transcendental years. That was when I read a lot of poetry and became involved in holistic approach to life. I took time to enjoy nature and wasn't involved in much technologically. I listened to a lot of Cocteau Twins of course and other ethereal. I was moved by books from the well known transcendentalist movement. I even read sci-fi books by authors such as George Orwell, Issac Isamov and even a modern author Clive Barker.
I was so moved that during that time, I began writing a book. My idea was so original and I was so proud. It seems that everything in my life was telling me this story and I just had to write it all down. It was almost completely engrossing at times. My idea involves a girl much like me, in fact it was about a lot of things I'd been through. The thing is that it was also sci-fi in nature but not until the reader is truly exposed to as many facets of the character to have brought it into reality.
I had two spiral notebooks filled with the story/saga when I saw an advertisement for a movie that sounded familiar but still dry.
I saw this movie, as I'm sure you have too, and I cried. That was my story and if I end up publishing it people will think that I'm a hack.
So I burned it. :( Both notebooks burned to ashes.
I may try that again someday because my story is better and more relate-able.
the movie .....Matrix. Again, my story is better and doesn't slip off into some techno fight epic. My story based in the here and now and I've even come up with more details than that story. Plus truly, mine was first. My husband read it before I burned it and he said that it was so out there and it was so good.
Making yogurt again has inspired me. I've taken my journey back here.I've done some wild things and let myself get out of control at times. Just like high school I think back in amazement about the fact that I'm still alive.
I can't workout like I did then. I miss rollerblading especially. With MS though I become fatigued easily. Instead, I've found Yoga. It's relaxing and at the same time strengthening. As a Christian,I have refused to use any of the yoga verbiage. There is power in words, spoken or thought. I've told this to my personal instructor and she is fine with that. She's told me that I'm not the only person that has said this. I think it's time to form a new exercise term for those that do not welcome that type of energy.
Well I've gone on for a good bit. I'll keep you all updated.
for now...thank you for reading.
I was making it for years, that and my own flour, bread and baked goods as well as my own pasta and I juiced a lot of things.
During that time, which I lovingly refer to as my sort of transcendental years. That was when I read a lot of poetry and became involved in holistic approach to life. I took time to enjoy nature and wasn't involved in much technologically. I listened to a lot of Cocteau Twins of course and other ethereal. I was moved by books from the well known transcendentalist movement. I even read sci-fi books by authors such as George Orwell, Issac Isamov and even a modern author Clive Barker.
I was so moved that during that time, I began writing a book. My idea was so original and I was so proud. It seems that everything in my life was telling me this story and I just had to write it all down. It was almost completely engrossing at times. My idea involves a girl much like me, in fact it was about a lot of things I'd been through. The thing is that it was also sci-fi in nature but not until the reader is truly exposed to as many facets of the character to have brought it into reality.
I had two spiral notebooks filled with the story/saga when I saw an advertisement for a movie that sounded familiar but still dry.
I saw this movie, as I'm sure you have too, and I cried. That was my story and if I end up publishing it people will think that I'm a hack.
So I burned it. :( Both notebooks burned to ashes.
I may try that again someday because my story is better and more relate-able.
the movie .....Matrix. Again, my story is better and doesn't slip off into some techno fight epic. My story based in the here and now and I've even come up with more details than that story. Plus truly, mine was first. My husband read it before I burned it and he said that it was so out there and it was so good.
Making yogurt again has inspired me. I've taken my journey back here.I've done some wild things and let myself get out of control at times. Just like high school I think back in amazement about the fact that I'm still alive.
I can't workout like I did then. I miss rollerblading especially. With MS though I become fatigued easily. Instead, I've found Yoga. It's relaxing and at the same time strengthening. As a Christian,I have refused to use any of the yoga verbiage. There is power in words, spoken or thought. I've told this to my personal instructor and she is fine with that. She's told me that I'm not the only person that has said this. I think it's time to form a new exercise term for those that do not welcome that type of energy.
Well I've gone on for a good bit. I'll keep you all updated.
for now...thank you for reading.
Monday, September 13, 2010
091310
30days until out wedding anniversary. Yay 9years of bliss.
I hope this year's celebration is eventful. I don't know what but I still hope that it's a nice day for us both.
Today, I did some yoga with a private instructor. My instructor is fantastic and just what I want from yoga. Today's achievement was simply working on balance and core strength. I do have a long way to go with balance but I see this as a victory since I was able to hold the 'Tree' pose on my left leg and with assistance with my right leg.
so hooray for today. :)
I hope this year's celebration is eventful. I don't know what but I still hope that it's a nice day for us both.
Today, I did some yoga with a private instructor. My instructor is fantastic and just what I want from yoga. Today's achievement was simply working on balance and core strength. I do have a long way to go with balance but I see this as a victory since I was able to hold the 'Tree' pose on my left leg and with assistance with my right leg.
so hooray for today. :)
Sunday, September 5, 2010
Yesterday when I was....content
This is my version of Yesterday, When I was Mad by Pet Shop Boys.
I guess I'm having a Pet Shop Boys day today. I just listened to a bunch of their songs on YouTube. Such good music, I consider it as a staple in my younger daze.
I use the spelling of daze because that's how I look at my youth. I was in a blurred confusion of lies my peers, parents and teachers were telling me. It's now surprise looking back now, that I can recognize the paths I was corralled into taking. I'd like to say that all of my decisions were my choices but in reflecting on the past and my choices, I can remember some of the choices were not really a choice. I think it was more of survival, taking the easy way out. I was content with it all, not happy not angry.
The best way I handled a tough situation was just walking away. Walking away from issues was easy when I had no vested interest in any outcome. Now, I can't say the same.
I came to this realization, yesterday. I know people in my life that I have just eliminated, cutting off any sort of communication. Simply walking away, that's my M.O. I'm fine with that though, I've always been an outcast ever since I was a kid. I can even remember back to kindergarten feeling this way; Maybe even younger, I was always a loner. Yes, I was shy but it was because I didn't want to be a part of a large group. I've never liked the competitive mentality. It's not natural to challenge another person. I look to the beauty of uniqueness in individuals.
So, what can you bring to the table?
I guess I'm having a Pet Shop Boys day today. I just listened to a bunch of their songs on YouTube. Such good music, I consider it as a staple in my younger daze.
I use the spelling of daze because that's how I look at my youth. I was in a blurred confusion of lies my peers, parents and teachers were telling me. It's now surprise looking back now, that I can recognize the paths I was corralled into taking. I'd like to say that all of my decisions were my choices but in reflecting on the past and my choices, I can remember some of the choices were not really a choice. I think it was more of survival, taking the easy way out. I was content with it all, not happy not angry.
The best way I handled a tough situation was just walking away. Walking away from issues was easy when I had no vested interest in any outcome. Now, I can't say the same.
I came to this realization, yesterday. I know people in my life that I have just eliminated, cutting off any sort of communication. Simply walking away, that's my M.O. I'm fine with that though, I've always been an outcast ever since I was a kid. I can even remember back to kindergarten feeling this way; Maybe even younger, I was always a loner. Yes, I was shy but it was because I didn't want to be a part of a large group. I've never liked the competitive mentality. It's not natural to challenge another person. I look to the beauty of uniqueness in individuals.
So, what can you bring to the table?
Saturday, September 4, 2010
4x4X4
yay, I'm nearly done solving my 4X4X4 A.K.A Rubik's Revenge.
I love scrambling it and solving it again and again.
I've gotten a lot faster and better at it too.
The first time I solved it, it took me about 3 days. Today, I started earlier then took a break for lunch. Now at this point, it's nearly solved. yay. So back to business.
Monday, August 30, 2010
more medical issues
I thought I was having a heart attack yesterday. As it turns out, it may be Gallstones. I'm upset because my GP said I have to go to the ER. Like I have the money for that. :(
Saturday, August 21, 2010
the edge of infinity is the beginning of reality
I had this lucid dream, when I was young. In fact I studied and practiced how to have lucid dreams,I had them often. Most dreams have been forgotten; But, there have been a few that stick with me. I have reached a point that I can conjure up dreams and "finish things" in some of my most upsetting or wonderful dreams. It depends on my goal.
In this one dream in particular, I was at a bazaar out in the desert. A friend joined me and showed me this row of small buildings that sold various items. The entire feel of the place was peaceful and serene, although it was out in the middle of the desert. The appeal to me is the solitude. I remember standing in the center of the market with all of the tables and shops. It had a mid Eastern or Moroccan style.
My friend disappeared into a shop and asked for me to go along.
I decided that was not where I was headed, I wanted to change course.
As I realized this in my lucidity, I stopped and faced toward the desert. I could see the horizon and beautiful colors of orange red and yellow. I turned back to look one last time at the shop, I then saw a small picture frame on the wall of the shop. I was able to go over and read it. I was so excited because I knew I was having a lucid dream and any messages like this can be important.
When I got right in front of the picture frame I read it over and over and over, So that I could write it into my dream journal upon waking.
I did just that.
The message didn't make too much sense to me, in fact it never did. Until today, the message seemed so important and I was confident that one day I could make sense of it. I even had this note added to my graduation announcements that I mailed out and handed out just to make sure I immortalized it.
I have read this article today and I gasped in shock and read it over. The article has explained how events happening today effect the past. That reality is only solid once we realize it.
the message in my dream: The edge of infinity is the beginning of reality.
a quote from the article: reality begins and ends with the observer.
The article goes on with explaining how our actions in the past are a direct result from what actions we take today. It's sort of a displacement theory and I understand it as space is set. Objects are set to always be what they are. If I decide today that I want to plant a tree, in the past I will plant that tree.
Now, think about this....did I decide to plant a tree today in the past because I have already planted that tree? Am I lying to myself and claiming that my thoughts today caused my actions in the past? Did I forget and am picking a simple common action because it's easy? I don't know.
The article also uses the analogy of, when observing light from a quasar, we set up a quantum observation on an enormously large scale. It means,the measurements made on the light now, determines the path it took billions of years ago.
It's very deep and maybe not all will understand or relate to it. I do and I am so thrilled that I somehow passed this message from today back to myself in the past.
In this one dream in particular, I was at a bazaar out in the desert. A friend joined me and showed me this row of small buildings that sold various items. The entire feel of the place was peaceful and serene, although it was out in the middle of the desert. The appeal to me is the solitude. I remember standing in the center of the market with all of the tables and shops. It had a mid Eastern or Moroccan style.
My friend disappeared into a shop and asked for me to go along.
I decided that was not where I was headed, I wanted to change course.
As I realized this in my lucidity, I stopped and faced toward the desert. I could see the horizon and beautiful colors of orange red and yellow. I turned back to look one last time at the shop, I then saw a small picture frame on the wall of the shop. I was able to go over and read it. I was so excited because I knew I was having a lucid dream and any messages like this can be important.
When I got right in front of the picture frame I read it over and over and over, So that I could write it into my dream journal upon waking.
I did just that.
The message didn't make too much sense to me, in fact it never did. Until today, the message seemed so important and I was confident that one day I could make sense of it. I even had this note added to my graduation announcements that I mailed out and handed out just to make sure I immortalized it.
I have read this article today and I gasped in shock and read it over. The article has explained how events happening today effect the past. That reality is only solid once we realize it.
the message in my dream: The edge of infinity is the beginning of reality.
a quote from the article: reality begins and ends with the observer.
The article goes on with explaining how our actions in the past are a direct result from what actions we take today. It's sort of a displacement theory and I understand it as space is set. Objects are set to always be what they are. If I decide today that I want to plant a tree, in the past I will plant that tree.
Now, think about this....did I decide to plant a tree today in the past because I have already planted that tree? Am I lying to myself and claiming that my thoughts today caused my actions in the past? Did I forget and am picking a simple common action because it's easy? I don't know.
The article also uses the analogy of, when observing light from a quasar, we set up a quantum observation on an enormously large scale. It means,the measurements made on the light now, determines the path it took billions of years ago.
It's very deep and maybe not all will understand or relate to it. I do and I am so thrilled that I somehow passed this message from today back to myself in the past.
Friday, August 13, 2010
Friday the Thirteenth
Well, I apparently missed the peak of the meteor shower. :( Not because I slept through it, this time it was because of clouds blocking my view. Oh well, maybe tonight. I have been lucky enough to have seen some nice meteors all ready this week.
I am happy that this is an annual event, in my mind it marks the exit of summer making room for autumn. Autumn is my favorite season for so many reasons.
I had my infusion at the infusion center which is right there at the hospital. I was elated that my husband was finally able to join me this time. I was also happy when the nurse weighed me, I was happy to have put on weight. I know that's weird to hear coming from a woman. To me it means that I've built up some muscle mass. This is evidence of my success in gaining more strength and balance as well as having more energy.
I have reached this small goal through simple stretching and balance building techniques. I have kept my goals realistic and attainable which has made it easy for me to reach. Keeping a level head and positive outlook is always been my secret weapon.
That said, I am off to workout doing stretches and maybe some free weights.
I am happy that this is an annual event, in my mind it marks the exit of summer making room for autumn. Autumn is my favorite season for so many reasons.
I had my infusion at the infusion center which is right there at the hospital. I was elated that my husband was finally able to join me this time. I was also happy when the nurse weighed me, I was happy to have put on weight. I know that's weird to hear coming from a woman. To me it means that I've built up some muscle mass. This is evidence of my success in gaining more strength and balance as well as having more energy.
I have reached this small goal through simple stretching and balance building techniques. I have kept my goals realistic and attainable which has made it easy for me to reach. Keeping a level head and positive outlook is always been my secret weapon.
That said, I am off to workout doing stretches and maybe some free weights.
Saturday, August 7, 2010
Update on my status
I started writing in a notebook and making notes about my progress.
I've noticed that in the last month or two, my energy has improved despite the summer heat. It is such a nice yet small improvement that I've become more positive and that has kind of snowballed into more energy. Let's face it, when you don't feel good you (at least, I) tend to have less motivation and less energy. That can sort of feel like being trapped in quicksand. The more I struggle, the more energy that drains and the more hopeless I've felt.
It's all about making a mental decision to get up (literally) stretch and move around. After doing this I picked up my free weights and tried to build my flexibility as well as my muscle tone. I have deduced, the time that I was at my worst and not doing basic movements like pushing a shopping cart in the store (sadly doing that for a full grocery store visit is still above my ability at this point). It's working on a realistic idea and taking the baby steps toward those goals.
So, I had to be realistic with myself about my goals and my condition and also be prepared for the challenge as well as be ready to face slip ups and set backs.
It's not going to be easy but I've acknowledged that and have promised not to lie to myself about it.
Copied directly from my notebook so far
July 25th-ish:
Lots of energy, cleaned all day.
*I've made a mental decision to get my body under control* at times when my body buckled from physical exhaustion I told myself "I can't do this!" I heard what I said aloud, then added "But I will!"
I noted which body parts ached the most and which seemed to become exhausted first so I could focus on those parts.
[my rating system overall]
Stamina 10 -I've always had good endurance
strength 3- for now, a month ago I'd give myself a 2
mood-4 battling depression but that's a whole other issue
spirituality-10 although sometimes I become preoccupied
diet 6-focusing on eating good meals is easy it's drinking enough water and remembering to eat that are the issues for me
finishing tasks 1- that is a big issue for me but I'm improving
sleep 5- sometimes I can't fall asleep because my mind races
Today I did workout a little with my 10lb free weight my arms are pretty good I rank them at an 8
my legs -1- (negative 1)
my back is bad -0- (zero/null)
even though my legs are bad to stand on it is something that muscles rebuild more easily than my back.
My back is the first part that spasms and aches. Then the muscles refuse to straighten up. I have completely buckled forward when this happens. :p
the spot is almost/just above or parallel to my elbows [then I have a drawing with an X showing just where]
Balance needs work but I found on my left leg/entire side I'm very weak still.
I've tried to balance on my tiptoes- NO :< not even for a second
balance on my heels- NO :< not even for one second
I felt a pain coming up from a squatted position on my left ankle on the front. Sort of the crook of my ankle if that's what it's called. ?
There is a real loss of my ability to move my foot a certain way with standing. This needs work.
-end of note-
so overall, I need to work on my flexibility, strengthen my back and legs and make sure I make notes about my progress.
It's already one week into August, I've done some other working out but I did not note it. Physically I am the same, the big accomplishment was doing my stationary sitting bike for 30 min. Another day I did some stretching and floor work focusing on balance. (sort of yoga designed for MS but the guy goes way too fast) So I picked certain parts and stretches that felt good and gocused on balance and strengthening the muscles required for balance.
I also dug out my flare bottle and have worked on my eye hand coordination. Back in my flare bartending days I always thought it was a great workout. That's part of why I enjoyed it. I can't capture the back hand stall yet, that will come with more yard days. *shout out to Mike at Flairco :D* If you want a good fun workout get a Flairco http://www.flairco.com/welcome.cfm flair bottle and Dean's video to teach you basic moves...or visit the FBA website.
l8r kids and thanks for reading
I've noticed that in the last month or two, my energy has improved despite the summer heat. It is such a nice yet small improvement that I've become more positive and that has kind of snowballed into more energy. Let's face it, when you don't feel good you (at least, I) tend to have less motivation and less energy. That can sort of feel like being trapped in quicksand. The more I struggle, the more energy that drains and the more hopeless I've felt.
It's all about making a mental decision to get up (literally) stretch and move around. After doing this I picked up my free weights and tried to build my flexibility as well as my muscle tone. I have deduced, the time that I was at my worst and not doing basic movements like pushing a shopping cart in the store (sadly doing that for a full grocery store visit is still above my ability at this point). It's working on a realistic idea and taking the baby steps toward those goals.
So, I had to be realistic with myself about my goals and my condition and also be prepared for the challenge as well as be ready to face slip ups and set backs.
It's not going to be easy but I've acknowledged that and have promised not to lie to myself about it.
Copied directly from my notebook so far
July 25th-ish:
Lots of energy, cleaned all day.
*I've made a mental decision to get my body under control* at times when my body buckled from physical exhaustion I told myself "I can't do this!" I heard what I said aloud, then added "But I will!"
I noted which body parts ached the most and which seemed to become exhausted first so I could focus on those parts.
[my rating system overall]
Stamina 10 -I've always had good endurance
strength 3- for now, a month ago I'd give myself a 2
mood-4 battling depression but that's a whole other issue
spirituality-10 although sometimes I become preoccupied
diet 6-focusing on eating good meals is easy it's drinking enough water and remembering to eat that are the issues for me
finishing tasks 1- that is a big issue for me but I'm improving
sleep 5- sometimes I can't fall asleep because my mind races
Today I did workout a little with my 10lb free weight my arms are pretty good I rank them at an 8
my legs -1- (negative 1)
my back is bad -0- (zero/null)
even though my legs are bad to stand on it is something that muscles rebuild more easily than my back.
My back is the first part that spasms and aches. Then the muscles refuse to straighten up. I have completely buckled forward when this happens. :p
the spot is almost/just above or parallel to my elbows [then I have a drawing with an X showing just where]
Balance needs work but I found on my left leg/entire side I'm very weak still.
I've tried to balance on my tiptoes- NO :< not even for a second
balance on my heels- NO :< not even for one second
I felt a pain coming up from a squatted position on my left ankle on the front. Sort of the crook of my ankle if that's what it's called. ?
There is a real loss of my ability to move my foot a certain way with standing. This needs work.
-end of note-
so overall, I need to work on my flexibility, strengthen my back and legs and make sure I make notes about my progress.
It's already one week into August, I've done some other working out but I did not note it. Physically I am the same, the big accomplishment was doing my stationary sitting bike for 30 min. Another day I did some stretching and floor work focusing on balance. (sort of yoga designed for MS but the guy goes way too fast) So I picked certain parts and stretches that felt good and gocused on balance and strengthening the muscles required for balance.
I also dug out my flare bottle and have worked on my eye hand coordination. Back in my flare bartending days I always thought it was a great workout. That's part of why I enjoyed it. I can't capture the back hand stall yet, that will come with more yard days. *shout out to Mike at Flairco :D* If you want a good fun workout get a Flairco http://www.flairco.com/welcome.cfm flair bottle and Dean's video to teach you basic moves...or visit the FBA website.
l8r kids and thanks for reading
Tuesday, August 3, 2010
whether weather never and what ever
I <3 the days of overcast skies.
There was/is this huge wildfire that burned for days just west of us. It was so large that a firetruck got too close to it and the flames sprang onto the truck. The firefighters lept off and the fire consumed the entire firetruck.
That was last week's news.
Now this beautiful haze has drifted overhead filtering the direct sunlight (which I hate)the filtered light has cast an orange light onto everything. I feel like I'm living in sepia it's beautiful.
The sunset was a magnificent pink orange and red. I know what Cocteau Twins meant now.
I hope this system stays trapped above us for now. If it does decide to move off, I hope that those clear skies only return overnight so I can watch the Perseids Meteor Shower. (08/12-13/10)link
http://earthsky.org/astronomy-essentials/earthskys-meteor-shower-guide
it's going to be an exceptional display this year. I'll head up to the highest peak to see if I have to.
There was/is this huge wildfire that burned for days just west of us. It was so large that a firetruck got too close to it and the flames sprang onto the truck. The firefighters lept off and the fire consumed the entire firetruck.
That was last week's news.
Now this beautiful haze has drifted overhead filtering the direct sunlight (which I hate)the filtered light has cast an orange light onto everything. I feel like I'm living in sepia it's beautiful.
The sunset was a magnificent pink orange and red. I know what Cocteau Twins meant now.
I hope this system stays trapped above us for now. If it does decide to move off, I hope that those clear skies only return overnight so I can watch the Perseids Meteor Shower. (08/12-13/10)link
http://earthsky.org/astronomy-essentials/earthskys-meteor-shower-guide
it's going to be an exceptional display this year. I'll head up to the highest peak to see if I have to.
Monday, August 2, 2010
I gotta get out more...
An old friend from high school has his travel photos posted on Face Book.
I'm jealous of Matt. He's kick'n it with a kangaroo, in Australia. Matt's riding high like a king on top of an elephant. He's enjoying the majestic stature of a giraffe and in another contrasting photo he's holding a cute tiger cub (at least I think it was a tiger cub). Matt has been humbled at the base of a giant Sequoya and also dominating over mother nature riding the waves off the coast in Bali.
Suffice it to say, I gotta get out more.
I'm jealous of Matt. He's kick'n it with a kangaroo, in Australia. Matt's riding high like a king on top of an elephant. He's enjoying the majestic stature of a giraffe and in another contrasting photo he's holding a cute tiger cub (at least I think it was a tiger cub). Matt has been humbled at the base of a giant Sequoya and also dominating over mother nature riding the waves off the coast in Bali.
Suffice it to say, I gotta get out more.
Thursday, July 15, 2010
My day today...
My days are pretty much the same, as far as what I do. Putting the title on this it will pretty much apply to any day unless I post something different.
Today I woke up when I heard my husbands alarm go off. It usually scares me for some reason. And not just startled but I feel my heart pound and for a moment I'm terrorized as if I was about to die. Never mind the time that I was sound asleep and he started to wake me up by gently rubbing my leg while he stood next to the bed. Oh my gosh I was so scared and I even screamed and the worst part is that I for a moment had no idea where I was and who he was. I don't know what that's all about. But that wasn't today.
After his alarm woke me up, I clutched my chest thinking I was having a heart attack.
I finally calmed down and was angry at myself for this reaction. I wonder when this will stop, I wonder also if this is somehow related to my medications and if so which one.
After climbing out of bed, and it is a climb since the bed is higher than your basic bed. (it comes up to about 3') I then headed off to make my breakfast which is always a challenge for me. I made my oatmeal because it's easy to microwave it. 2min and 22seconds, that's easy for me to hit 2-2-2 start. That's pretty much what I have everyday but today I 'spiced it up' I also had an English muffin. I don't eat much these days because it's so hard for me to make anything. This took me about 30min to prepare believe it or not. I guess this can explain why I've dropped down to about 115 when I used to weigh 150. Yeah I was on the thick side but I also worked out a lot (daily) and I Rollerbladed or biked. I really miss working out, my quality of life has diminished;My muscles atrophied as a result but I still have the nice definition still visible.
I try to at least lift my 10lb free weight which I do with ease. It's the squats while holding the weight that is tough. I am determined to start working out again and I know one day it will happen. Plus working out does help keep me happy and this has been proven scientifically.
I've also been stuck in my industrial music bubble for the last week and have truthfully been trapped in since high school I've only added music but I always go back to my love. Even Cocteau Twins who I've also loved since high school too doesn't give me that same energy that listening to Front Line Assembly gives me, I guess it's true that I'm a rivet head at heart.
After my start to the day I pretty much watch the news, the Bonnie Hunt Show and Deal or No Deal. I'll have lunch, today I had a hamburger, broccoli, home made pasta salad and some fruit. All of this is prepared in the beginning of the week and I just take it out and nuke it. Yay Hubby.
(no dinner)
That's about it. Then I go on the internet. So, my day will be the same tomorrow, I may even live it up and have that English muffin again.
Today I woke up when I heard my husbands alarm go off. It usually scares me for some reason. And not just startled but I feel my heart pound and for a moment I'm terrorized as if I was about to die. Never mind the time that I was sound asleep and he started to wake me up by gently rubbing my leg while he stood next to the bed. Oh my gosh I was so scared and I even screamed and the worst part is that I for a moment had no idea where I was and who he was. I don't know what that's all about. But that wasn't today.
After his alarm woke me up, I clutched my chest thinking I was having a heart attack.
I finally calmed down and was angry at myself for this reaction. I wonder when this will stop, I wonder also if this is somehow related to my medications and if so which one.
After climbing out of bed, and it is a climb since the bed is higher than your basic bed. (it comes up to about 3') I then headed off to make my breakfast which is always a challenge for me. I made my oatmeal because it's easy to microwave it. 2min and 22seconds, that's easy for me to hit 2-2-2 start. That's pretty much what I have everyday but today I 'spiced it up' I also had an English muffin. I don't eat much these days because it's so hard for me to make anything. This took me about 30min to prepare believe it or not. I guess this can explain why I've dropped down to about 115 when I used to weigh 150. Yeah I was on the thick side but I also worked out a lot (daily) and I Rollerbladed or biked. I really miss working out, my quality of life has diminished;My muscles atrophied as a result but I still have the nice definition still visible.
I try to at least lift my 10lb free weight which I do with ease. It's the squats while holding the weight that is tough. I am determined to start working out again and I know one day it will happen. Plus working out does help keep me happy and this has been proven scientifically.
I've also been stuck in my industrial music bubble for the last week and have truthfully been trapped in since high school I've only added music but I always go back to my love. Even Cocteau Twins who I've also loved since high school too doesn't give me that same energy that listening to Front Line Assembly gives me, I guess it's true that I'm a rivet head at heart.
After my start to the day I pretty much watch the news, the Bonnie Hunt Show and Deal or No Deal. I'll have lunch, today I had a hamburger, broccoli, home made pasta salad and some fruit. All of this is prepared in the beginning of the week and I just take it out and nuke it. Yay Hubby.
(no dinner)
That's about it. Then I go on the internet. So, my day will be the same tomorrow, I may even live it up and have that English muffin again.
Monday, July 12, 2010
'Til Tuesday on Friday good thing it's Monday
http://www.youtube.com/watch?v=K5XJMoVzPD4
I've had one heck of a month so far. As I've said before I hate summer. (when I dislike something I don't capitalize it, there's a little glimpse into my psyche)
I had an appointment for SoluMedrol, which is an IV steroid to help stop an MS flare up. To refresh the story, I had collapsed on a very hot day a few weeks ago. My fall wasn't just a faint feeling but a total weakness on the left side of my body.
I was very upset about this for so many reasons but mostly because I'm honestly worried about just how quickly things have progressed with me and knowing that my treatments so far have not been successful in slowing my disease.
I was scheduled for a SoluMedrol treatment at the infusion center which is also on the ground floor of the hospital. I have gotten to know the staff there and they know me and even commented on how I'm now part of the family. In this area called the Short Stay you can also find people with other medical needs such as Chemotherapy and the like. I've even made some friends in there to which I say 'see you next month' when I leave. So, yes we are quite like family.
I headed in for my treatment the 5th of July. The reason I remember is because I had this ordered before that and yet I have to have three consecutive days of the SoluMedrol and Short Stay was taking the long weekend off. Also I leave my IV in so when I go in on the other days it saves me from getting a new needle each time.
Of course Monday the 5th was still considered a holiday by most around here and I had the Short Stay practically to myself. The nurses who were administering this treatment asked for a test to make sure I was okay for the drug. As it turns out I wasn't. Nothing major just a UTI. I was on antibiotics for only three days so I guess it's a strong one.
They scheduled me right back just after day three, which is also sort of odd. I did the first course and it was fine. I have been told how I take the IV "like a champ" because I absorb it as if it were water. A lot of people will have an increase in their systolic/diastolic rates but I just keep beating along at my even and low rate of 114/70. I'm just a relaxed person I guess.
I was fine and went home, things were good. Then I started to notice some pain at the IV site and figured the nurse can check it out tomorrow. As the night progressed so did my headache which I'd assumed was just a caffeine withdrawal headache.
I finally went to bed but I woke up at around 0400hrs with this pounding headache and I could tell I was running a fever. I was falling in and out of sleep until it was time for me to go back to the Short Stay clinic.
I told the nurse who was about to start my IV that I think I have a fever and maybe we shouldn't do this just yet. So she took my vitals and yes my temp was at 99.5. Along with my low blood pressure I also have a low temperature normally so when she called that out I was shocked.
I waited at Short Stay until my Doc could be reached and the clinic would follow his advice for my treatment. I waited in my comfy chair while I did puzzles and read up on the Sandy vs Jesse drama. I then could hear this sound which I at first was a little kid.
(in a slow and child like tone) "mmmm mmmmm....mmmmm"
Unfortunately I was the only one in the room and then I heard a high pitched shrill and I realized that it was not a kid.
She started yelling "I want my aunt pleeeeaaaase!" I could not make out the other more calm parts of the conversation. I could tell they were calming her down though, and I heard her yell and ask for her aunt again. I heard a man yell as if he'd just entered their room "What IS Going on in here!"
There was more muffled talking and I heard a man sternly and calmly telling her something. My guess was he was telling her to calm down, where she is and so forth.
My eyes were looking up at the air vent where the sound was coming from when a nurse came in and asked what I was looking at. I paused and decided to share this with her. This turned out to be the wrong choice.
She asked what are they saying to you. That's when I knew she thought that I was crazy.
So this went on and I was even given a bell to ring if I heard the voices again.
There is a difference between overhearing a conversation and "Hearing Voices". And I didn't go to nursing school to learn that one.
I was treated differently by the nurses, I bet I was the highlight of the day for them. I had to give two blood samples before I was allowed to leave. As I left though one of the nurses had to share with me her bad reaction to a drug and she thought that everyone was after her or conspiring against her. In my cruel cynical way I asked "was that drug Cannibus? cuzz I know it makes some people paranoid."
We'll see what happens during my next Short Stay adventure.
Freaked out by this I've shared all of my feelings about this with whoever wants to listen. So thank you, for indulging my self therapy through this blog.
Thoughts,Comments or Loose Change is always welcome.
I've had one heck of a month so far. As I've said before I hate summer. (when I dislike something I don't capitalize it, there's a little glimpse into my psyche)
I had an appointment for SoluMedrol, which is an IV steroid to help stop an MS flare up. To refresh the story, I had collapsed on a very hot day a few weeks ago. My fall wasn't just a faint feeling but a total weakness on the left side of my body.
I was very upset about this for so many reasons but mostly because I'm honestly worried about just how quickly things have progressed with me and knowing that my treatments so far have not been successful in slowing my disease.
I was scheduled for a SoluMedrol treatment at the infusion center which is also on the ground floor of the hospital. I have gotten to know the staff there and they know me and even commented on how I'm now part of the family. In this area called the Short Stay you can also find people with other medical needs such as Chemotherapy and the like. I've even made some friends in there to which I say 'see you next month' when I leave. So, yes we are quite like family.
I headed in for my treatment the 5th of July. The reason I remember is because I had this ordered before that and yet I have to have three consecutive days of the SoluMedrol and Short Stay was taking the long weekend off. Also I leave my IV in so when I go in on the other days it saves me from getting a new needle each time.
Of course Monday the 5th was still considered a holiday by most around here and I had the Short Stay practically to myself. The nurses who were administering this treatment asked for a test to make sure I was okay for the drug. As it turns out I wasn't. Nothing major just a UTI. I was on antibiotics for only three days so I guess it's a strong one.
They scheduled me right back just after day three, which is also sort of odd. I did the first course and it was fine. I have been told how I take the IV "like a champ" because I absorb it as if it were water. A lot of people will have an increase in their systolic/diastolic rates but I just keep beating along at my even and low rate of 114/70. I'm just a relaxed person I guess.
I was fine and went home, things were good. Then I started to notice some pain at the IV site and figured the nurse can check it out tomorrow. As the night progressed so did my headache which I'd assumed was just a caffeine withdrawal headache.
I finally went to bed but I woke up at around 0400hrs with this pounding headache and I could tell I was running a fever. I was falling in and out of sleep until it was time for me to go back to the Short Stay clinic.
I told the nurse who was about to start my IV that I think I have a fever and maybe we shouldn't do this just yet. So she took my vitals and yes my temp was at 99.5. Along with my low blood pressure I also have a low temperature normally so when she called that out I was shocked.
I waited at Short Stay until my Doc could be reached and the clinic would follow his advice for my treatment. I waited in my comfy chair while I did puzzles and read up on the Sandy vs Jesse drama. I then could hear this sound which I at first was a little kid.
(in a slow and child like tone) "mmmm mmmmm....mmmmm"
Unfortunately I was the only one in the room and then I heard a high pitched shrill and I realized that it was not a kid.
She started yelling "I want my aunt pleeeeaaaase!" I could not make out the other more calm parts of the conversation. I could tell they were calming her down though, and I heard her yell and ask for her aunt again. I heard a man yell as if he'd just entered their room "What IS Going on in here!"
There was more muffled talking and I heard a man sternly and calmly telling her something. My guess was he was telling her to calm down, where she is and so forth.
My eyes were looking up at the air vent where the sound was coming from when a nurse came in and asked what I was looking at. I paused and decided to share this with her. This turned out to be the wrong choice.
She asked what are they saying to you. That's when I knew she thought that I was crazy.
So this went on and I was even given a bell to ring if I heard the voices again.
There is a difference between overhearing a conversation and "Hearing Voices". And I didn't go to nursing school to learn that one.
I was treated differently by the nurses, I bet I was the highlight of the day for them. I had to give two blood samples before I was allowed to leave. As I left though one of the nurses had to share with me her bad reaction to a drug and she thought that everyone was after her or conspiring against her. In my cruel cynical way I asked "was that drug Cannibus? cuzz I know it makes some people paranoid."
We'll see what happens during my next Short Stay adventure.
Freaked out by this I've shared all of my feelings about this with whoever wants to listen. So thank you, for indulging my self therapy through this blog.
Thoughts,Comments or Loose Change is always welcome.
Friday, July 2, 2010
contemplating the efficacy of .., uncertainty?
I'm working through what is seemingly a lot more stress than I should be dealing with. I have so many issues on my plate, in fact more than I dealt with when I was a Bartender. That was a fun job, I love bartending and I miss it terribly. The beauty of bartending was once the last drinks were poured you could see an end to the shift.
With this I see no end. I have bills that come in the mail and they never stop. Being unemployed is nice having no manager critiquing me but now I have the pile of medical bills that even if I was working are astronomical.
Asking for assistance from the hospital seems like it was easy, still uncertain if they will help me though. Asking for assistance from the electric company also seemed like they were laughing at that request, they still helped, sort of. Asking for help from my medical insurance took more energy than applying for disability with the Social Security Administration, which was tough. I was approved on the first try though. I am still not sure if that's good or bad. Good that they agree that I'm disabled but it's bad because it's not like having a cold because it means they realize that I won't be getting better.
So it's all of this worry, this uncertainty of where the money for the mounting bills is going to simply materialize from. I'm not certain of the treatment that I'm on, if it's working or not. I'm counting the days that I have been able to get around on my own.(it's a continually shrinking number and less than I like to admit)
all of the issues keep building and most have no resolution and I want to know who's idea it was to make patients such as myself,try to be responsible for all of these things. All the planning, keeping track of bills, filling out forms, making and keeping appointments keeping track of all of these things and also the normal stuff too. Laundry, cooking, eating, bathing and also keeping up with friends and family.
It's too much. I get worn out just with the most basic things like brushing my teeth.
I've even come to a point where I don't eat because if I don't eat then I don't have to floss and maybe brush if I think I should. I don't get up because if I get up that means that I will have to eat, so I just stay asleep. If I don't go to the doctor, then I won't get a bill. If I don't get dressed in fresh clothes, then I don't have to wash the ones I already have on. If I don't do this then I won't have to do that and so forth....
This is my life these days.
Is this mentality healthy? No, I don't think it is. I think it's perpetuated by the whole system and there is no end to the shift. It's not like bartending.
With this I see no end. I have bills that come in the mail and they never stop. Being unemployed is nice having no manager critiquing me but now I have the pile of medical bills that even if I was working are astronomical.
Asking for assistance from the hospital seems like it was easy, still uncertain if they will help me though. Asking for assistance from the electric company also seemed like they were laughing at that request, they still helped, sort of. Asking for help from my medical insurance took more energy than applying for disability with the Social Security Administration, which was tough. I was approved on the first try though. I am still not sure if that's good or bad. Good that they agree that I'm disabled but it's bad because it's not like having a cold because it means they realize that I won't be getting better.
So it's all of this worry, this uncertainty of where the money for the mounting bills is going to simply materialize from. I'm not certain of the treatment that I'm on, if it's working or not. I'm counting the days that I have been able to get around on my own.(it's a continually shrinking number and less than I like to admit)
all of the issues keep building and most have no resolution and I want to know who's idea it was to make patients such as myself,try to be responsible for all of these things. All the planning, keeping track of bills, filling out forms, making and keeping appointments keeping track of all of these things and also the normal stuff too. Laundry, cooking, eating, bathing and also keeping up with friends and family.
It's too much. I get worn out just with the most basic things like brushing my teeth.
I've even come to a point where I don't eat because if I don't eat then I don't have to floss and maybe brush if I think I should. I don't get up because if I get up that means that I will have to eat, so I just stay asleep. If I don't go to the doctor, then I won't get a bill. If I don't get dressed in fresh clothes, then I don't have to wash the ones I already have on. If I don't do this then I won't have to do that and so forth....
This is my life these days.
Is this mentality healthy? No, I don't think it is. I think it's perpetuated by the whole system and there is no end to the shift. It's not like bartending.
Sunday, June 27, 2010
June 27th 2010
Have you ever walked into someone's house and noticed a 'different' smell?
Sometimes it's good, like flowers or something fresh. Other times, it's just a different smell neither good nor bad. The worst is when you notice something that's just 'OFF' and you just know it's not good.
Today I noticed a smell in my own home neither good nor bad, I thought to my self, "that's weird to notice a different smell in my own home"
I wonder if it's the MS playing tricks on my senses. I have recently had hallucinations of the visual/audio sort. I'm not hearing voices (at least that's what she assured me)I am able to 'shut off' my hearing when I don't focus on sounds like music or white noise.I know it sounds odd but that's the best way that I can explain it. I have to have my eyes open to hear everything too which is also weird. The visual thing is not like a magic smurf dancing on the counter but subtle things that remind me of a psychotropic experience.
I have been preoccupied with Farm Ville on FB because I don't want to deal with anything else. When I get mail, it seems to be mostly bills and not working it's a very depressing thing.
ggfn
(gotta go for now)
Sometimes it's good, like flowers or something fresh. Other times, it's just a different smell neither good nor bad. The worst is when you notice something that's just 'OFF' and you just know it's not good.
Today I noticed a smell in my own home neither good nor bad, I thought to my self, "that's weird to notice a different smell in my own home"
I wonder if it's the MS playing tricks on my senses. I have recently had hallucinations of the visual/audio sort. I'm not hearing voices (at least that's what she assured me)I am able to 'shut off' my hearing when I don't focus on sounds like music or white noise.I know it sounds odd but that's the best way that I can explain it. I have to have my eyes open to hear everything too which is also weird. The visual thing is not like a magic smurf dancing on the counter but subtle things that remind me of a psychotropic experience.
I have been preoccupied with Farm Ville on FB because I don't want to deal with anything else. When I get mail, it seems to be mostly bills and not working it's a very depressing thing.
ggfn
(gotta go for now)
June is almost over...
It was brought to my attention, from a friend, that this blog needs updating. I am so glad to do this I just honestly didn't think anyone was paying attention.
That said, I am happy to let you know how things are going these daze.
Well today is the Coeur d'Alene Ford Iron man Triathlon and the city has it's eyes focused on Sherman Ave, which is just a few blocks from my house. As the racers come in I can actually hear the announcer at my house, that is how close I am to the race.
I am not doing that well as some of you may be able to tell based on my FB picture and Blog there. This blog is more or less for people who don't use FB and also a little off the beaten path because I'm wanting to express that I'm not blogging to put myself on display in such a public format.
You have to actually search intentionally for this blog and not just stumble onto it.
with that disclaimer I will end this post and continue on a whole new blog entry, at this site. I want to keep the conversations separate.
-N
That said, I am happy to let you know how things are going these daze.
Well today is the Coeur d'Alene Ford Iron man Triathlon and the city has it's eyes focused on Sherman Ave, which is just a few blocks from my house. As the racers come in I can actually hear the announcer at my house, that is how close I am to the race.
I am not doing that well as some of you may be able to tell based on my FB picture and Blog there. This blog is more or less for people who don't use FB and also a little off the beaten path because I'm wanting to express that I'm not blogging to put myself on display in such a public format.
You have to actually search intentionally for this blog and not just stumble onto it.
with that disclaimer I will end this post and continue on a whole new blog entry, at this site. I want to keep the conversations separate.
-N
Monday, April 12, 2010
monotoneee in der sud see
well, here I am still stumbling and flittering through life both figuratively and in actuality.
I think the monotony of life is the one assurance I have right now. Like the slow warm currents of the Atlantic Jet Stream. Death, taxes and monotony yay....
At least the monotony is stable in my life even if I'm not. (both representations apply here as well)
I am pleased with this sort of butterfly paced life. It definitely beats the urgency of people racing like hummingbirds wings. Chill out people, the afterlife will still be there waiting for you.
I think the monotony of life is the one assurance I have right now. Like the slow warm currents of the Atlantic Jet Stream. Death, taxes and monotony yay....
At least the monotony is stable in my life even if I'm not. (both representations apply here as well)
I am pleased with this sort of butterfly paced life. It definitely beats the urgency of people racing like hummingbirds wings. Chill out people, the afterlife will still be there waiting for you.
Wednesday, March 31, 2010
My Sorrow
I am overcome with sorrow. Not depression but I am in Mourning.
Mourning for friends and family lost. I grieve also for my own shortfalls.
Not the physical or even mental but spiritual shortcomings.
I am deeply spiritual, that is something I have always shared with people.
I do not show it outwardly as those in the "bible belt" do but it is just as strong
if not stronger than some of them.
I have realized that being in the throes of work immersed in the daily chaos of life, has all to blame for my lack of spiritual projection. I cannot continue with work at this stage of my condition (MS) and I am thankful to God for that. He has removed me from a life of stress and adversaries that I do not have a place for in my life, not now, not ever.
Take it to heart that if people do not hear from me, it's because the didn't listen to me.
-n
Mourning for friends and family lost. I grieve also for my own shortfalls.
Not the physical or even mental but spiritual shortcomings.
I am deeply spiritual, that is something I have always shared with people.
I do not show it outwardly as those in the "bible belt" do but it is just as strong
if not stronger than some of them.
I have realized that being in the throes of work immersed in the daily chaos of life, has all to blame for my lack of spiritual projection. I cannot continue with work at this stage of my condition (MS) and I am thankful to God for that. He has removed me from a life of stress and adversaries that I do not have a place for in my life, not now, not ever.
Take it to heart that if people do not hear from me, it's because the didn't listen to me.
-n
Sunday, March 21, 2010
you are loved
I just woke up and got going today around noon.I fixed myself a bowl of oatmeal with protein powder, I started a pot of coffee and settled myself on the couch. I then started up my laptop with the intention of finding out what happened to my BF Christiane. where are u Hun?
Instead, I saw a friend confirmation on face book from a Cocteau Friend. I followed it to comment on her page to find that a dear mutual friend has passed. RIP Leesa.She found she had breast cancer which then moved into her brain. I am fortunate to have called her Friend and know she is finally through fighting. You are in my heart Leesa
It seems that each year that passes I have had some monumental tragedy.this is not as horrific as my mother telling me she was diagnosed with pancreatic cancer in Aug. 2008 then passing in May of 2009. I'm not even passed the mourning of that when now I am faced with the death of a friend. This no doubt adds to my fatigue, since early 2008 my ms has gotten worse and worse. I find the simplest of tasks like getting dressed is difficult. Usually I don't unless I have to venture off to the doctor's.
Sadness does effect my MS in ways that most don't realize.
So, while I might seem like I'm upbeat, I am truly sad with my plight.
I thank our father in heaven for having chosen me as one he trusts can deal with this in the right way. My lesson is that I will be tested by him just as Job was tested and I am thankful for that. I am not sad for myself but for the others affected by these circumstances and I pray that they will find comfort in the Lord, our refuge.
Sunday, March 7, 2010
please...ignore me
please just ignore me and the details of my daily life. No, it's not nice to have people "help" when I don't ask for it. I want you to leave me alone never mind what I am doing but mind your own frailties before you decide you "need to help" me unsolicited.
Doing this is like taking what excrement you've produced and asking me to bronze it for you.
I find it hilarious when all of the sudden perfect strangers or even people who know my name or even know me down to my physical details such as the color of my eyes. Do you know what's in my mind? Do you know where I've been? Do you carry such wisdom to know even my dreams while I am sleeping? No, you don't have an inkling of me.
Mind yourself and give me only what I ask of you and for now, I ask for you to ignore my hindered gait, my incomprehensible speech and also my lack of interest in you. When I am ready I will ask for help from you and know that if I am not asking anything from you that I don't need or want your assistance.
-n
Doing this is like taking what excrement you've produced and asking me to bronze it for you.
I find it hilarious when all of the sudden perfect strangers or even people who know my name or even know me down to my physical details such as the color of my eyes. Do you know what's in my mind? Do you know where I've been? Do you carry such wisdom to know even my dreams while I am sleeping? No, you don't have an inkling of me.
Mind yourself and give me only what I ask of you and for now, I ask for you to ignore my hindered gait, my incomprehensible speech and also my lack of interest in you. When I am ready I will ask for help from you and know that if I am not asking anything from you that I don't need or want your assistance.
-n
Wednesday, March 3, 2010
a revelation...
As per my previous entry, I do feel the need to cut my hair because it simply gets in my way. Yes, it will be sad but it grows.
Unless you are constantly getting chemotherapy.
I am thankful that I am not going through anything like that treatment wise.
I have heard that with certain dramatic cases of MS, there is Chemo used.
Well I'm not there, yet. There is someone in my life right now who is.
I've let her know that if she wants my hair she will have dibs.
It will make her feel better, I will also feel better and on top of that it is an enormous feel good.
That's where I'm at right now.
On the religous side, I have thought about the season of lent and remember that as a girl growing up Catholic, my mother would force us to pick something we liked and give it up.
I now as an adult realize how wrong that is. God doesn't want us to suffer and he gave us free will. I think that going without happiness as a child is a form of childabuse when the child has no say in the matter.
God wants an offering/sacrafice that is sweet to him. Giving up something that does you no good in his eyes is like casting off unwanted possesions and calling it a good donation. Ha, I've gone to thrift stores and noone gives away a brandnew blueray player. Call it what it is, sloughing off undesireables. So I have been really praying about this and what is it that I can sacrafice during lent and I have come up with being proud. I will give that up but also on the other side of that my offering to him is that I will mourn for my own sins.
I have thought about what that means to me and I will explore them and realize my burdens and ask for forgiveness and in doing so I have truly began to feel sad and shameful for the things I have done. I was once proud of those things and carried them like a badge. Although, these are the things that led me here I hve no use for those things.
Unless you are constantly getting chemotherapy.
I am thankful that I am not going through anything like that treatment wise.
I have heard that with certain dramatic cases of MS, there is Chemo used.
Well I'm not there, yet. There is someone in my life right now who is.
I've let her know that if she wants my hair she will have dibs.
It will make her feel better, I will also feel better and on top of that it is an enormous feel good.
That's where I'm at right now.
On the religous side, I have thought about the season of lent and remember that as a girl growing up Catholic, my mother would force us to pick something we liked and give it up.
I now as an adult realize how wrong that is. God doesn't want us to suffer and he gave us free will. I think that going without happiness as a child is a form of childabuse when the child has no say in the matter.
God wants an offering/sacrafice that is sweet to him. Giving up something that does you no good in his eyes is like casting off unwanted possesions and calling it a good donation. Ha, I've gone to thrift stores and noone gives away a brandnew blueray player. Call it what it is, sloughing off undesireables. So I have been really praying about this and what is it that I can sacrafice during lent and I have come up with being proud. I will give that up but also on the other side of that my offering to him is that I will mourn for my own sins.
I have thought about what that means to me and I will explore them and realize my burdens and ask for forgiveness and in doing so I have truly began to feel sad and shameful for the things I have done. I was once proud of those things and carried them like a badge. Although, these are the things that led me here I hve no use for those things.
Monday, March 1, 2010
shave and a haircut.....
I am pondering the idea of shaving my head completely. I don't want to come off like the crazy britney and I don't want to look like susan powder but I once had short hair and it looked good on me.
A complete shaved look I've heard shows intrigue with the aire of confidence.
I suppose I'm not intriguing nor am I confident across the board so I'm not sure I have the personality to carry it off but if I do I will definately miss these lovely locks.
A complete shaved look I've heard shows intrigue with the aire of confidence.
I suppose I'm not intriguing nor am I confident across the board so I'm not sure I have the personality to carry it off but if I do I will definately miss these lovely locks.
Sunday, February 28, 2010
the tragic life of mine...
here's the deal and I'll keep it quick.
my condition is getting far worse. I have followed my doctor's orders to ween myself off of avonex to make it safe for me to go on tysabri.
well, it was supposed to be one month for this and at this point it has been nearly two. This is all thanks to my insurance company. Not only have they given me the ol' runaround but also my neurologist's office.
I'm frustrated and so are the staff at the neurology clinc, my family and friends.
I am nearly to a point that I will be a total invalid.
ty for reading.
my condition is getting far worse. I have followed my doctor's orders to ween myself off of avonex to make it safe for me to go on tysabri.
well, it was supposed to be one month for this and at this point it has been nearly two. This is all thanks to my insurance company. Not only have they given me the ol' runaround but also my neurologist's office.
I'm frustrated and so are the staff at the neurology clinc, my family and friends.
I am nearly to a point that I will be a total invalid.
ty for reading.
Thursday, February 18, 2010
hello from a sleepy state
Hi there. Today I am very very tired. I cannot seem to wake up and I want to go back to sleep but I can't because I have this 20 page form to fill out and return to the SSA by the 22nd. Today is the 18th. Wow, they are pressing their luck here.
So far, it looks very promising though. I have no doubt that I will complete this task.
That is what I'll be working on today. I am so excited that my Dad has joined face book. I will be able to give him updates and we will be able to exchange messages via FB.
Hopefully soon I will have a Vlog I just need to locate the cable that connects my video camera to my laptop/pc.
For the time being, I have this photo of me going into the MRI tube.
At the bottom of my front page you will see my most concerning MRI scan.
Monday, February 15, 2010
February 15, 2010
Hello all, I am letting you know that things are going well. I don't have any word yet from my neurologist regarding when I will start on the new therapy.
It is all tangled up in the red tape of my insurance company and also the strict guidelines they have for receiving Tysabri.
Keep in mind that Tysabri must be delivered intraveniously, only administered by a nurse who has been fully trained for this medication specifically. They are referred to as the "Touch" certified nurses. I first to read and agree to then sign the application to receive Tysabri.
This whole process has been a little overwhelming but I understand why they have these precautions.
For those who do not know, his is the most agressive MS therapy at this point. Unfortunately some of the patients have actually died from this.
Some of thse close to me are sacared of this and think that I should not go this route. I am at the point that I am sick of this dramatic progression, I must stop it if at all possible.
If it's my time then so be it. The one good side to this is that I will be at the hospital so if anything goes wrong I will be in capable hands.
It is all tangled up in the red tape of my insurance company and also the strict guidelines they have for receiving Tysabri.
Keep in mind that Tysabri must be delivered intraveniously, only administered by a nurse who has been fully trained for this medication specifically. They are referred to as the "Touch" certified nurses. I first to read and agree to then sign the application to receive Tysabri.
This whole process has been a little overwhelming but I understand why they have these precautions.
For those who do not know, his is the most agressive MS therapy at this point. Unfortunately some of the patients have actually died from this.
Some of thse close to me are sacared of this and think that I should not go this route. I am at the point that I am sick of this dramatic progression, I must stop it if at all possible.
If it's my time then so be it. The one good side to this is that I will be at the hospital so if anything goes wrong I will be in capable hands.
Monday, February 8, 2010
an introduction..to my blog timeline
All right here's the deal, I have a blog on FB and I am not able to scroll the page to the right using that application. I love this application because I can see the entire line as I type and I don't have this wierd page reload when I hit the enter key.
I will keep this blog as my first blog and I can vent all I want and only share what I choose on FB.
That is my explaination as to why the first posts were all on one day and also out of order....(I was editing and choosing which ones I want)
I will keep this blog as my first blog and I can vent all I want and only share what I choose on FB.
That is my explaination as to why the first posts were all on one day and also out of order....(I was editing and choosing which ones I want)
01.28.09
this is so frustrating to try to type, I keep hitting the mouse pad on my laptop and the entire page will be lost.
speaking of LOST yay this Tuesday.
well back to what I tried to say b4, I am up later than I wanted to be I think because I am making sure all of my information is all together and to make sure that I am ready for my SSA inteview tomrrow/today. I know that it's normal to be denied the first time so this is my second time and I'm hoping that I get approved this time. the sad thing is tht I waited more than 60 days to refile so technically they might see this as a first attempt. Well, I have all the paperwork submitted and I also meet a lot more of the critera this time.
The other Issue that I have RN is that I am not on my Avonex since I have to let it filter out of my systm. The pharmasutical company Biogen has informed me to do this as well as my doctors. I will have less control of my symptoms now as it begins to overtake my CNS.
If I were doing this and still working I think I would have another extreme exacerbation at work from the stress and that does not do me any good. I am luvky enough to be employed at the resort and I am a living testament to the fact that if you do what is asked of you and abide by their rules then you will be rewarded with their assistance when it comes your turn.
I just say thanx to all the people I work with and hope to be of some service in the near future. I hope that I will be able to work at the resort real soon but I am still not sure of what capacity I would be of use. This is the $64,000.00 question, what can I bring to the table that noone else can? I can wager a guess, I am compassionate and understanding and that will get me nowhere in this field. I am taking this to heart and hoping maybe falsely that something will open up for me. I won't be holding my breath though.
Well, thanx 4 reading this and I hope that you've enjoyed this. Stay tuned for further info.
do you take a 'time out'?
I ask because I have found with our my TV and no I'm not able to enjoy too many other physical activities. :(
I have accepted this time to simply just take a 'time out' and think about all of the things that my very hectic work life just wouldn't make room for.
I realize that I have done this all of my life from studing for tests back in my school days, learning lines in a play, training for a job, working of course , paying bills, having a social life caring for others, family activities and well I'm certain you all can relate and some of you are thinking of your own lives as you sigh with an eye roll in agreement and relief.
I am asking to know, am I the only person who has this issue in recentrting yourself? Some may refer to it as meditation or daydreaming but whatever term you use I think it is overlooked.
I have been just relaxing and letting my trail off in its own direction and all I can say is wow to the revelations I have just pushed off for "important things"
These ideas and concepts that I've had are at first elementary like what makes me laugh or what makes me cry? After thinking on this and other things I do examine at a deeper and more meaningful level. Maybe this is what monks have been doing for years and years.
As smple as it sounds it has definately given me a sort of recharge not only with my self but also my outward look at others. I am still rooted deply in my old habits of trying to find answers through any other outlet except me. I have all of my own answers and to me this explains why I tend to get upset with people who impose their ideas unsolicited on me. As cruel as it may be I prefer to try to make a go of it on my own. Just like a baby bird taking its first flight there are no training wheels and no parachutes just the confidence that it will know what to do. I think that I have been strangled by other peoples insecurities in me which is actually hurtful and makes me ask what have I done to give the impression that I need or want help.
Just imagine if we lived in a world where noone could think for themselves or make mistakes and always ran to someone for their next step and people that are like that and cultivated in such a way are living up to the victem mentality. I am not a victem simply because I may take a different road than others I am still forging ahead and that's what matters.
02.01.10
Well here I am in a Brave New World. Hopefully my ending won't be as sad as Huxley's book.
Definately a pageturner just the same. So I am sitting before my laptop and wondering what activity should I try tomrrow?
It's truly sad that I cannot seem to wake before noon and even further still I am so fatigued that I do not have the energy to get dressed and out the door before 5. So you see this is my dilema. I did let the Social Security Administration know about my extreme fatigue as well as other issues. But wait, I think I'm getting ahead of myself here. So, earlier this week, on the 28th I had this phone interview with the SSA going over my claim for disability. I made sure to mention all of the points that I think are important for filing disability. I let him know that I am not able to work and have had deminishing health since at least 2003. I understand that since I was making a sustainable income that I don't qualify to have the payments/status retroactive. This is fair to me, it would be nice but I understand that if every nickle and dimer took this approach we'd all be in the poorhouse. Well through my conversation with him I was slure to mention how my years of hiking, biking, rollerblading and even working out are over. It is sad and depressing to me because these are the things that I would look forward to enjoying on days off. Now I am excited about if case nuber 7 has the half a million dollars in it. I guess a psychologist would determine that I'm depressed and maybe that's true but as I mentioned yesterday, I need time to simply zone out and meditate. Isn't that what drugs like Xanex do for people? I think it's just being able to reach that state that's the hardest. It's my personal opinion that mary J should be leagalized and classified as an antidepressant but oviously the decision makers got too baked themselves and have forgotten how easy it makes things.
For now I will rely on my prescribed Celexxa and hopefully relax and gain a nonchelonce about missing out on life. This post was not meant to be depressing yet somehow it is. If you decide to read A Brave New World, I emplore you to skip the final pages.
02.04.10
Tomrrow is my much anticipated Neurologist appointment. I know what he will say though. New leisons and my MS is progressing the issue that a lot of friends and family have are sentiments of anger. Well to those concerned for my well being I have this to say, your voiced concerns have stressed me out, I understand what is going on and I accept it. Support me in my decisions and just be there for mIe. I want everyone to give me space and trust me and please trust me that I know I have doctors and professionals who I trust.
This said, I am doing well, considering. I am in a downturn health wise because I am off of my Avonex. It was helping me as was the copaxone at one time. RN I am sort of in limbo as far as life goes. I sleep then maybe wake up for water then sleep more and I may force mself up to take meds and eat then I sleep a little more. I am all out of whack with my zircaidian rhythm and that has been an issue all of m life just ask my sister Jenny. I have alwas been a night owl watching the sunrise was always my cue to go to bed. I guess that's part of why I slipped easily into the goth life. Oh how I miss those days. There is NO goth scene here at all. Maybe you'll see some highschoolers dressed as they might be, these days though that image is reserved for the rock scene. I don't get it. If you ask them about some gostaples such as Bauhaus or Dead Can Dance they will look at you like you were vomiting battery acid on them. (LOL at my own imagery)
Suffice it to say I am getting older and the good ole days are seemingly behind me. I still adore the scene, the music and the commroderay among friends in that , what I refer to as , elite group. I think most of all I miss the history and the building of the concise group with others like me who undestand me just as I understand them. Starting over is the story of my life, as my sister and I grew up constantly being uprooted and navigating the new surroundings trying to find our foothtold. It is hard to be the outsider. Although I have lived here since 2005 I still don't feel as though I'm rooted deeply here as I was in Florida. The answer I am able to come up with is because of friends and family. Whether it was by choice, on my part, I regret ignoring my sister for over ten years. Or whether the separation was because of career moves, when my parents relocated to Aliso Viejo, CA. Or even worse when my DH and I were kicked out, in spite of having no money or sustainable incomes because of.....family jealousy. On that note, we had other options but I was begged by my mother to come out there she then later kicked us out. Uuuuuggghhh, life's not fair. I have become stronger for all of the emotional blows, I survived through more than most can handle in their lifetime and all this before I'm 35. I guess why I'll ask for my personal space and trust that I know what I'm doing.
01.20.10
Today has been a long test of my patients. I was contacted this morning by my Neurologist's office. I have been asked to get an MRI asap.
I said I could work with them on that and gave them the authority to set it up whenever they can get me in. I have one schedualed for this coming Sunday. It is requested for this MRI, to have a blood test to monitor also my creatin and glucose levels. I ran off to the Alpha clinic for my blood test since I hadn't eaten for several hours as per the pre-glucose test. The Alpha clinic didn't have the fax. I was so angry and let down that I had upheld my part and yet someone dropped the ball.
Guess what, I get to fast again tomrrow. Uuuuggghhh!
01.15.10
So today I am a little better...(that's the optomist in me)
Still incredibly fatigued but I am in a very positive mental state.
That is my "break through" I suppose. Not having to absorb the comments and suggestions of others has given my mind a point at which I am able to finally able to think my own thoughts unguided by others.
I enjoy this solititude.
my advice for others out there is to give people space. I have gone to the people I need on my own terms just as I let others come to me regarding them. I like that any unsolicited advice hasn't flooded my life.
Still incredibly fatigued but I am in a very positive mental state.
That is my "break through" I suppose. Not having to absorb the comments and suggestions of others has given my mind a point at which I am able to finally able to think my own thoughts unguided by others.
I enjoy this solititude.
my advice for others out there is to give people space. I have gone to the people I need on my own terms just as I let others come to me regarding them. I like that any unsolicited advice hasn't flooded my life.
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