I've spent a good part of the last 24 hours sleeping. Although, I did go to Macy's and got 2 pair of pants with pockets. I learned that a majority of my pants/capri's/skirts ... had no pockets. ... didnt' need them when all I do is go to grocery store/church/doctor appointments.
I definitely need them at school !!
This week at school has been quite the week. Monday, a holiday did nothing to make it seem shorter! I had a Humanities test on Wednesday and an Algebra test on Thursday. Because the Humanities teacher did not have the tests back for us on Friday, nor posted on blackboard (electronic webpage where our grades are supposed to be posted) I've got no idea how I did on the humanities test.
It will be Tuesday before I know the Algebra test. Our first homework was due on last Tuesday, that wasn't handed back in before the test, so I wasn't sure how I'd done on that before taking the test ... yuck
The humanities test was more difficult to study for than I'd anticipated. The teacher, who is nice, but has more of an artistic bent to her mindset than I do, thinks on a totally different plane ...and I found her outline for the test difficult to study from.
At first, I thought it was *ME* and being out of school for almost 20 years, then showed my son ..and realized ...oh no! It's not me ... it's ..well ... it's the way she thinks and the way I think.
Unfortunately, we got the outline on a Tuesday night, and I figured out her 'outline' and how it related to the book ...the night before the test a full WEEK after recieving the outline!!! I spent HOURS trying to get seemingly random facts into my brain which actually were not out of order, nor random ...just ... she and I approach things totally different!! YIKES!
So, next test, I'll know!!! Hopefully, my familiarity with the Renaissance era will have gotten me through. The infuriating thing was not her study tools, nor her teaching ..nor anything but my blessed stupidity ... and breaking the first rule of test taking.
Extra credit ...was identifying a picture ... Couldn't remember the name, so I didn't stress, figured I'd get half credit for putting down the painter ... put down who I thought it was ... and wrote it down ..then thought ..nah.... it's that guy back there from question 3 ...... (who was not the right answer in question 3, but just there as a choice) ...so I erased MY gut instinct ...and ... wrote down the extra name from question 3 ...only
I was right the first time.
ARGHARGH ARGH ARGH... I have known since I WAS SEVEN YEARS OLD DO NOT ERASE YOUR GUT INSTINCT!!!!!!!!!!!!!!!!!!!!!!!!!!!
She threw me with a trick question, although I got it right. She asked about the printing press and what it did for the people of the renaissance. She had one question totally wrong, and then 2 identical answers. Except the year ...one year .. in the 1300 (important to church history) and one year in the 1400's .. my brain, having had lots of Bible/church history ... split in two as I tried to figure out ..which was which!
I answered correctly *whew*
Then came the algebra test. While I've been known to have a few panic attacks. I know few people with eating disorders who've not had them on occassion. Most of mine are in fact, food related, therapy related or the such. The last time someone actually SAW me have a panic attack ... I was about 21. I'm 43 .... I've since learned to pretty well internalize them (granted, the end result does some pretty good self punishment ...but still ...my panic attacks are not visible)
So Wednesday night, Don tries to help me ... and I'm in tears, repeatidly. He and I don't quite see eye to eye. He also doesn't understand that when he says "you're smart enough to get this if you'd just focus" that all that does is to serve to make me feel even more stupid than I'm already feeling for not understanding what I'm doing wrong and I really really really REALLY don't get this. His getting angry because I've just done 3 problems 'just like it' (um, no, they weren't they did not look anything like it to me, just because they did to him, did not mean they did to me) ...
Keep in mind ... I NEVER took algebra, not even a semester of it ... so it's not like it's been 30 years since i took it and I've forgotten it ... I never HAD it. I'm learning all of this for the first time. Pre algebra was in 7th grade ...and that my friends ...was a very very long time ago and I don't remember anything from it except that I had the best teacher in the world and that Russell Sellers was in my class and was the cutest boy in the 7th grade and he was my boyfriend and he'd picked ME over all the other girls.
That's ...not much to go on 31 years later!
So, I'm working Wednesday night going over something about distributive properties to simplify like terms. What I don't understand (in all reality ... I did not get it) is that I'm not solving an equation ...I did not know that. I really didn't. I'd done over 40 problems ..and through tears and frustration I can't figure out WHY I'm doing what I'm doing and why this is like this .... because it's not DONE ... (because I think to simplify something means to finish, to finish means to =) so ..why is it that when I get to 7y -14 am I not FINISHING it? It took me 4 hours to realize there was no realization that there was no '=' and I was not doing an EQUATION.
(no, no one had explained this to me)
So, I go to school early on Thursday and I work in the math lab, and I work with a math teacher ..who then frustrates me a bit as she tries to show me an 'easier' way with a principal I've not been shown yet (because she's assuming I'm retaking this as a review from not having had algebra in 30 years) and then she backs up and says 'oh forget that! ...
I started to go up stairs about 15 minutes before class and i could not breathe. I called my former pastors wife ...because I knew I could call her and ask her to pray for me and not only get prayer ..but not get 'my poor baby' or "i'm so sorry" or 'buck it up huck" or "suck it up cream puff" or "if you'd just pay attention"
but ... I'd get "ok, let's look at this for what it really is ....
step 1
step 2
step 3
step 4
and pray"
Which, is exactly what she did.
But while on the phone with her, I'm not breathing, or breathing too hard, with tears pouring down my face and I can't keep my legs under my feet and a lady comes up behind me and guids me to a chair. She writes me a note and says "I'm a nursing instructor, are you ok or are you having a panic attack? Should we call 911?"
I pointed to the panic attack. The next thing I know, I've got 2 people bringing me water and 2 wet rags, one's on my neck, one on my forehead ...all this while Carla is talking to me about my class.
She reminds me that this is all brand new information and I'm expecting myself to be able to solve trigonomotry and get straight A's because ...hey! I'm Peggikaye ... i should be perfect. Only, I've never been perfect, I just think everyone thinks I should be or I won't be accepted.
She reminds me that the worst that can happen is that I fail the test ... I show my work, every step ...and then the teacher can see what I'm not understanding ...and then he can help me.
Take my time. Do not be the student that has to be the best student in the class and be the first one done.
By the time I went into class, I could almost breathe ... almost. He handed out the test ...most people were done in 15 to 20 minutes. It took me 55 minutes. I cried several times in the test. I have no idea how I did ...but me... ms I hate showing my work ...showed every step I took to get to where I was going ...(he also said he'd give partial credit for work shown that was right even if the answer was wrong)
I did my best .....
He and I had many discussions these last three weeks ...about absolute value and things I'm having a hard time accepting ....
Carla told me that she won't believe that I can't accept those stupid things that 'just are' in math.
Just because ... she said that I accept things of God on blind faith all the time ...and if I can do that ...then I certainly can do it in the Math he created as well ... gee did she have to put it that way?
The severity of the panic attack has left me physically exhausted. I think it is what has left me emotionally worn this weekend. It has been well over 20 years since I've had a panic attack that severe. The physical fall out .. has been pretty significant .... Autoimmunity is worsened by stress and my body is paying the price.
I'm resting a lot this weekend ...caught up on homework and reading ....
I hope that Tuesday he's got the results so I can see ... .. ... ...
Dr. Suess
"And will you succeed? Yes indeed! Yes indeed! Ninety Eight and Three Quarters guarenteed!"
Saturday, September 06, 2008
Saturday, August 30, 2008
Humanities homework
Our Humanities 2 class has a blog. We MUST post at least one post and 1 comment a week.
In class we got into a discussion of the dying arts and humanities in today's world, and the change in priorities. Patrarch was quoted as saying the highest form of art was poetry and yet, in today's world ...poetry is the least respected of all the arts. (much to this poets heart's dismay)
My humanities instructor suggested I blog about it for my week 2 blog post. So, I did, when I started to do it, I decided hey! If the whole idea is that poetry is no longer respected, why not do it in the form of an Italian Sonnet ..the very form no longer respected ..and took 5 minutes and threw together what is most likely my worst poem ever written. She loved it ..not really sure what that means ... does she need to read the rest of my poetry or ... let's not go there
but .. here is my blog post with the very first sonnet I've ever written. Warning for those who've read my poetry before .. this IS not my normal quality of writing ... it IS a 5 minute poem ...
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
While this is certainly not the best poem I've ever written, when I brought up the frustration of the lack of respect of poetry in today's world while Petrarch declared it the highest form of art. I could not resist deciding to place my frustration in the form of a sonnet. I personally have never been assigned a sonnet before ... so ... forgive the lack of ...um, perfection ;o) I did use theabbaabbacdcdcd format (italian rather than shakesperean) format for the rhyming. So, in the attempt to start the discussion of poetry being no longer respected in today's society ... here is my statement in the form of a pseudo sonnet:
Death of Respect
by Peggikaye Eagler
Petrarch declared the best there could be,
Of all the literary forms of pen or quill,
Not prose nor epic tales but words that bring one still!
Time and meter, rhyme of heart, that of poetry.
Petrarch saw the poems opened new ways to see,
To share things otherwise kept in at will,
Poetry frees the heart to share the love that doth fill!
Art form to be kept alive, would be a shame to ever bury!
But here we are generations of change,
Progress brags of the technology of life,
Experts tell us all we know, they give us range!Making life easier?
Improvements increase... strife.
Removal of art, demotions of heart, does no one find this strange?
If Petrarch were here now, he'd feel the twist of the technological knife.
like I said ...certainly not the best of my poems! HA!But ..I'm going to leave it like that and we can discuss it in the comments.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
only commenting going on is one guy who said he liked the line "removal of art, demotions of heart" (actually, I like that too) and the teacher who said she loved the sonnet.
So much for starting a conversation on the topic.
But, got my A .
In class we got into a discussion of the dying arts and humanities in today's world, and the change in priorities. Patrarch was quoted as saying the highest form of art was poetry and yet, in today's world ...poetry is the least respected of all the arts. (much to this poets heart's dismay)
My humanities instructor suggested I blog about it for my week 2 blog post. So, I did, when I started to do it, I decided hey! If the whole idea is that poetry is no longer respected, why not do it in the form of an Italian Sonnet ..the very form no longer respected ..and took 5 minutes and threw together what is most likely my worst poem ever written. She loved it ..not really sure what that means ... does she need to read the rest of my poetry or ... let's not go there
but .. here is my blog post with the very first sonnet I've ever written. Warning for those who've read my poetry before .. this IS not my normal quality of writing ... it IS a 5 minute poem ...
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
While this is certainly not the best poem I've ever written, when I brought up the frustration of the lack of respect of poetry in today's world while Petrarch declared it the highest form of art. I could not resist deciding to place my frustration in the form of a sonnet. I personally have never been assigned a sonnet before ... so ... forgive the lack of ...um, perfection ;o) I did use theabbaabbacdcdcd format (italian rather than shakesperean) format for the rhyming. So, in the attempt to start the discussion of poetry being no longer respected in today's society ... here is my statement in the form of a pseudo sonnet:
Death of Respect
by Peggikaye Eagler
Petrarch declared the best there could be,
Of all the literary forms of pen or quill,
Not prose nor epic tales but words that bring one still!
Time and meter, rhyme of heart, that of poetry.
Petrarch saw the poems opened new ways to see,
To share things otherwise kept in at will,
Poetry frees the heart to share the love that doth fill!
Art form to be kept alive, would be a shame to ever bury!
But here we are generations of change,
Progress brags of the technology of life,
Experts tell us all we know, they give us range!Making life easier?
Improvements increase... strife.
Removal of art, demotions of heart, does no one find this strange?
If Petrarch were here now, he'd feel the twist of the technological knife.
like I said ...certainly not the best of my poems! HA!But ..I'm going to leave it like that and we can discuss it in the comments.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
only commenting going on is one guy who said he liked the line "removal of art, demotions of heart" (actually, I like that too) and the teacher who said she loved the sonnet.
So much for starting a conversation on the topic.
But, got my A .
Tuesday, August 26, 2008
Here Ye! Here Ye!
The Grandest of Grand Rounds
 |
| From Stuff |
This weeks Grand Rounds have been hosted by our own Mother Hen ...er Dear Blog Friend Rural Doctoring! (hint: if you want in on the Mother Hen joke, come and join us at the Dr. A show on Thursday Nights. ;o) (this next week is the anniversary show. This link is to last weeks show, with Suture for a Living with Ramona and is Fantastic!)
So, Start over at Rural Doctoring with your cup of coffee (yummy!) and settle in for the best of the medical blogsphere and some great shakespeare (with no apologies ;o) ) and enjoy some quiet time.
It's getting to me
My science class is above my head, at least this first part of it, mathmatically. It requires skills from math classes I've never taken ...and some skills from classes I've not had since the 7th grade ..which is 31 years ago. My best friend is 31 years old.
I have taught some of these skills to Samuel, but he was advanced, and I was teaching them to him about 8 years of age, so ..at 18, almost 19, that means ...about 10 years ago. And teaching them, you just kind of scan the material, make sure they catch it, and let it go right back out of the head as you check the work with the teacher's key. (especially with a kid who is primarily self taught)
The reality is, after taking four hours to accomplish only getting 9 out of 27 problems done ...and even my very bright son having some problems with them, I've decided to go and see if I can drop the class, and register for a 12 week class ... and keep my full time status (for purposes of financial aide). This would mean, in 2 weeks I'd start my 4th class and drop, this week, the science class. The book, I'd have to keep (all $224 of it) and save it for next semester after having a semester of algebra under my belt ... and getting some skills to help me to understand what is is that I'm missing.
I simply can't take 13 hours of classes and doing 15 hours of homework for one class. (that is how much time I've put in this week, and yet, am still 18 questions short of completeing the assignment) It has also left me on the short end of reading for another class.
So, that is what I will do ... I hate to do it, but if I can, I will. If I can't maintain my full time status, I'm ...essentially in hot water.
Not sure what to do then.
I'll let you know.
On the sick front ... I finished the 2nd round of stronger Leviquin and now, the cough is back with a vengence. I'm going to give the prednisone and nasal spray a couple of more days ...and then ... CALL AGAIN.
I'm wondering how much my change of immunosuppression has to do with this ... is the Imuran from Cellcept playing a role in this not being able to kick this????
I have taught some of these skills to Samuel, but he was advanced, and I was teaching them to him about 8 years of age, so ..at 18, almost 19, that means ...about 10 years ago. And teaching them, you just kind of scan the material, make sure they catch it, and let it go right back out of the head as you check the work with the teacher's key. (especially with a kid who is primarily self taught)
The reality is, after taking four hours to accomplish only getting 9 out of 27 problems done ...and even my very bright son having some problems with them, I've decided to go and see if I can drop the class, and register for a 12 week class ... and keep my full time status (for purposes of financial aide). This would mean, in 2 weeks I'd start my 4th class and drop, this week, the science class. The book, I'd have to keep (all $224 of it) and save it for next semester after having a semester of algebra under my belt ... and getting some skills to help me to understand what is is that I'm missing.
I simply can't take 13 hours of classes and doing 15 hours of homework for one class. (that is how much time I've put in this week, and yet, am still 18 questions short of completeing the assignment) It has also left me on the short end of reading for another class.
So, that is what I will do ... I hate to do it, but if I can, I will. If I can't maintain my full time status, I'm ...essentially in hot water.
Not sure what to do then.
I'll let you know.
On the sick front ... I finished the 2nd round of stronger Leviquin and now, the cough is back with a vengence. I'm going to give the prednisone and nasal spray a couple of more days ...and then ... CALL AGAIN.
I'm wondering how much my change of immunosuppression has to do with this ... is the Imuran from Cellcept playing a role in this not being able to kick this????
Saturday, August 23, 2008
End of week 1
Wow what a week.
My science professor sent me flying into a panic attack. I'm so unsure of how I'm going to handle that class. My weekend will be filled with trying to get the assignments done for that class.
My humanities class ... let's just not go there.
My algebra class, that I need so badly. I've got the nicest most gentle teacher in the world ... and I needed so badly to be there. But I went to my science class on Thursday morning and was coughing so badly & disrupting the class to the point the professor deemed it necessary to make some political statement about non smokers rights to not be disrupted by second hand smoke as well as smokers hack. (um .. I don't smoke, it's not smokers hack ...I'm SICK!!!)
OK, so I went back home to rest between the two classes, collapsed into bed, called the doc to say,"It's been a week, I took all 5 antibiotics and now I'm getting worse ... they said come in at 4:30). I could have gone to class ...except, I fell asleep and my husband told my son to let me sleep.
Got to the doctors and ... I had 102 fever. WHOOPS!
So ... more levaquin ..at 750 Mg's this time. A nasal spray with her thinking maybe it's coming from sinus'? Vera mist ... I've got bad sinus reactions to nasal sprays ...they make my nose bleed. 1 day on the 750 and already noticed a difference. So ... hopefully this time it's going to get it.
My Developmental Psych class is great. I love the teacher. She has a passion for people, a passion for the subject of psychology and a passion for teaching. That combination makes for a great class. We have a wide variety of ages from teenagers to older than myself ... and everywhere in between. Men and women ... boys and girls .. no large groups of anything no large groups of races or class ... very wide subset of the community at large of our city. It will make for a GREAT psychology class!
We have a woman, my age, from India in there, a young woman from Mexico and a man about 30 from Australia(raised in those countries, living here now) we have several races raised here in the US) every hair color and eye color imaginable. Very few native Oklahomans ... and the only thing we all had in common was there were only 3 majors that were represented ... psychology, nursing and education!
Wednesday I have a paper due that is going to be quite interesting to write. It's about where I was 10 years ago and how I've changed in three areas. Emotionally, physically, and Socially.
Well ... OK ... That's going to be quite the paper because it is exactly those changes and where I was 10 years ago, with my parenting ...that has caused me to decide to go back to school. The services, or lack there of ... available to me. The fatigue and desperation of dealing with the issues facing my children and the lack of respite care.
The feeling of being alone in the world as a family of kids with Tourette's and OCD and at the time what we thought was autism ...and it being treated as my child's disability that somehow had nothing to do with us ..when in fact ... if a child has a disability ..the entire family is affect.
When a family member is disabled ... the entire family is affected. For doctor's, therapists and other health care members to think otherwise ...they are fooling themselves. My children and husband are deeply effected by my having myasthenia gravis and lupus. I am deeply effected by my husbands post polio, Restrictive airway disease and scoliosis/kyphosis and the complications ... My husband and I are effected in many ways by the OCD and tourette's that our children deal with on a daily basis ...and trust me ... the brothers have to deal with ... in ways that cannot be described ..their siblings OCD and Tourette's and often it collides like a tornado with their own OCD issue and it takes a very wise, and gentle hand to help them to overcome the differences in their disorders that come head to head with each other.
A person with a chronic illness, is not simply an island to themselves, they are a member of a family and it ripples out and effects the other members and changes the fabric of the life of the other person helping to form the very character of who that person turns into ...for good or for bad.
My children could not have helped but be effected by my 27 hospitalizations and 15 surgeries, by my husbands 7 hospitalizations. They could not help but be effected by their own hospitalizations ... Samuel's 5 and Benjamin's 7 ... Benjamin's most serious being meningitis at the age of 7. With the most serious of all of these being Don's 45 day stay last year when he almost died. We are, a family, not a group of individuals ...
Yet, 10 years ago, when I would take one of my sons, or myself to the doctor, the only thing dealt with was the problem at hand. Nothing else taken into consideration ..and I had all these other balls in the air ... and I felt like I was going to tip over at any minute ... and I had no idea if I was going to crash or the world was going to implode ...what was worse ...was I wasn't even sure if anyone was aware that there was even this sick person named Peggikaye trying to keep 4 sick people balancing ...and if they did crash ..would anyone even know to pick up the pieces.
I would take Benjamin for an evaluation and they would say "he's autistic we need to do OT 2 times a week, speech therapy 1 time a week and PT 1 time a week". He needs to have Cognitive Behavioral therapy and send us to a behavioral psychologist who would catch on rather quickly that I worked well with my son. Psychologist after psychologist worked with us two or three appointments, gave us tools to work at home and sent us on our way. We did 40 hours a week of ABA in our home and we used the public school system ...
We did everything we knew to do. We went to Autism support meetings we took him to pediatric nurologist, and pediatric gastroenterologists. We took him to pediatric pulmonologists and pediatric orothopedists ... all in an attempt to get this little body ... no single part of any of it seemed to work right ... trying to get it pulled into a functioning ...something resembling ... functionable.
In the meantime ...we had another child who was also emerging with tics and obsessions and compulsions ...who also had an immune deficiency requiring his own fair share of appointments and pulmonologist appointments.
Many times Benjamin's tics collided with Samuel's OCD ...and at that time you would thing that we were in Nagasaki Japan ... a nuclear war would have been quieter.
Yet ... no therapist , no doctor ..no psychologist seemed to be able to deal witht hat issue because they were Samuel's doctor or they were Benjamin's doctor or therapist ...
And I ... was imploding and exploding and my heart was shattering and I had no idea what I was doing ....
I'd go to these doctors and therapists and be told ...for what is wrong these kids are in remarkable shape! What are you doing?
I'd look at them and want to pull their eyes out. "I'm FAILING!"
I had no idea that I was in fact succeeding because I was caught up in the middle of the battle
No one was there for us as a FAMILY. They were MY doctor.
They were Samuel's doctor
They were Benjamin's doctor.
They were Don's doctor.
No one was able to deal with the fall out of the issues that effected us all ... I was doing everything and I thought I was failing at everything. I had nothing to see into the future. No one told me that these diseases effect the family, it's a family issue.
When I get my degree, and I go into practice ...and young mother brings her ticcing child to me and says ..."why is he moving his head like this and blinking?"
And I help her to understand that it's a misfiring of a brain signal called a tic, and it can be managed ...with medications ...and it's ok, because it's just a disorder called Tourette's ... and he's normal for a kid with Tourette's.
But that it's not just her child that's been effected, but she has as well, and her husband and her other children ...
and that she's not alone ...
and that there is a light at the end of the tunnel ...
And one day the child will be 18, going to college and she'll be looking back to when he was 7 and going "WOW! look at what a great kid I have!" And the time of diagnosis and learning to cope will have been a time of enjoying her child ... not a time of fear and exhaustion ... and fear of failure and fear of loosing one of those balls in the air!
If I can do that for just one person, just one mom, just one child, one family. I will consider this time worth it.
My science professor sent me flying into a panic attack. I'm so unsure of how I'm going to handle that class. My weekend will be filled with trying to get the assignments done for that class.
My humanities class ... let's just not go there.
My algebra class, that I need so badly. I've got the nicest most gentle teacher in the world ... and I needed so badly to be there. But I went to my science class on Thursday morning and was coughing so badly & disrupting the class to the point the professor deemed it necessary to make some political statement about non smokers rights to not be disrupted by second hand smoke as well as smokers hack. (um .. I don't smoke, it's not smokers hack ...I'm SICK!!!)
OK, so I went back home to rest between the two classes, collapsed into bed, called the doc to say,"It's been a week, I took all 5 antibiotics and now I'm getting worse ... they said come in at 4:30). I could have gone to class ...except, I fell asleep and my husband told my son to let me sleep.
Got to the doctors and ... I had 102 fever. WHOOPS!
So ... more levaquin ..at 750 Mg's this time. A nasal spray with her thinking maybe it's coming from sinus'? Vera mist ... I've got bad sinus reactions to nasal sprays ...they make my nose bleed. 1 day on the 750 and already noticed a difference. So ... hopefully this time it's going to get it.
My Developmental Psych class is great. I love the teacher. She has a passion for people, a passion for the subject of psychology and a passion for teaching. That combination makes for a great class. We have a wide variety of ages from teenagers to older than myself ... and everywhere in between. Men and women ... boys and girls .. no large groups of anything no large groups of races or class ... very wide subset of the community at large of our city. It will make for a GREAT psychology class!
We have a woman, my age, from India in there, a young woman from Mexico and a man about 30 from Australia(raised in those countries, living here now) we have several races raised here in the US) every hair color and eye color imaginable. Very few native Oklahomans ... and the only thing we all had in common was there were only 3 majors that were represented ... psychology, nursing and education!
Wednesday I have a paper due that is going to be quite interesting to write. It's about where I was 10 years ago and how I've changed in three areas. Emotionally, physically, and Socially.
Well ... OK ... That's going to be quite the paper because it is exactly those changes and where I was 10 years ago, with my parenting ...that has caused me to decide to go back to school. The services, or lack there of ... available to me. The fatigue and desperation of dealing with the issues facing my children and the lack of respite care.
The feeling of being alone in the world as a family of kids with Tourette's and OCD and at the time what we thought was autism ...and it being treated as my child's disability that somehow had nothing to do with us ..when in fact ... if a child has a disability ..the entire family is affect.
When a family member is disabled ... the entire family is affected. For doctor's, therapists and other health care members to think otherwise ...they are fooling themselves. My children and husband are deeply effected by my having myasthenia gravis and lupus. I am deeply effected by my husbands post polio, Restrictive airway disease and scoliosis/kyphosis and the complications ... My husband and I are effected in many ways by the OCD and tourette's that our children deal with on a daily basis ...and trust me ... the brothers have to deal with ... in ways that cannot be described ..their siblings OCD and Tourette's and often it collides like a tornado with their own OCD issue and it takes a very wise, and gentle hand to help them to overcome the differences in their disorders that come head to head with each other.
A person with a chronic illness, is not simply an island to themselves, they are a member of a family and it ripples out and effects the other members and changes the fabric of the life of the other person helping to form the very character of who that person turns into ...for good or for bad.
My children could not have helped but be effected by my 27 hospitalizations and 15 surgeries, by my husbands 7 hospitalizations. They could not help but be effected by their own hospitalizations ... Samuel's 5 and Benjamin's 7 ... Benjamin's most serious being meningitis at the age of 7. With the most serious of all of these being Don's 45 day stay last year when he almost died. We are, a family, not a group of individuals ...
Yet, 10 years ago, when I would take one of my sons, or myself to the doctor, the only thing dealt with was the problem at hand. Nothing else taken into consideration ..and I had all these other balls in the air ... and I felt like I was going to tip over at any minute ... and I had no idea if I was going to crash or the world was going to implode ...what was worse ...was I wasn't even sure if anyone was aware that there was even this sick person named Peggikaye trying to keep 4 sick people balancing ...and if they did crash ..would anyone even know to pick up the pieces.
I would take Benjamin for an evaluation and they would say "he's autistic we need to do OT 2 times a week, speech therapy 1 time a week and PT 1 time a week". He needs to have Cognitive Behavioral therapy and send us to a behavioral psychologist who would catch on rather quickly that I worked well with my son. Psychologist after psychologist worked with us two or three appointments, gave us tools to work at home and sent us on our way. We did 40 hours a week of ABA in our home and we used the public school system ...
We did everything we knew to do. We went to Autism support meetings we took him to pediatric nurologist, and pediatric gastroenterologists. We took him to pediatric pulmonologists and pediatric orothopedists ... all in an attempt to get this little body ... no single part of any of it seemed to work right ... trying to get it pulled into a functioning ...something resembling ... functionable.
In the meantime ...we had another child who was also emerging with tics and obsessions and compulsions ...who also had an immune deficiency requiring his own fair share of appointments and pulmonologist appointments.
Many times Benjamin's tics collided with Samuel's OCD ...and at that time you would thing that we were in Nagasaki Japan ... a nuclear war would have been quieter.
Yet ... no therapist , no doctor ..no psychologist seemed to be able to deal witht hat issue because they were Samuel's doctor or they were Benjamin's doctor or therapist ...
And I ... was imploding and exploding and my heart was shattering and I had no idea what I was doing ....
I'd go to these doctors and therapists and be told ...for what is wrong these kids are in remarkable shape! What are you doing?
I'd look at them and want to pull their eyes out. "I'm FAILING!"
I had no idea that I was in fact succeeding because I was caught up in the middle of the battle
No one was there for us as a FAMILY. They were MY doctor.
They were Samuel's doctor
They were Benjamin's doctor.
They were Don's doctor.
No one was able to deal with the fall out of the issues that effected us all ... I was doing everything and I thought I was failing at everything. I had nothing to see into the future. No one told me that these diseases effect the family, it's a family issue.
When I get my degree, and I go into practice ...and young mother brings her ticcing child to me and says ..."why is he moving his head like this and blinking?"
And I help her to understand that it's a misfiring of a brain signal called a tic, and it can be managed ...with medications ...and it's ok, because it's just a disorder called Tourette's ... and he's normal for a kid with Tourette's.
But that it's not just her child that's been effected, but she has as well, and her husband and her other children ...
and that she's not alone ...
and that there is a light at the end of the tunnel ...
And one day the child will be 18, going to college and she'll be looking back to when he was 7 and going "WOW! look at what a great kid I have!" And the time of diagnosis and learning to cope will have been a time of enjoying her child ... not a time of fear and exhaustion ... and fear of failure and fear of loosing one of those balls in the air!
If I can do that for just one person, just one mom, just one child, one family. I will consider this time worth it.
Sunday, August 17, 2008
It's here
So. I'm really doing it. School starts tomorrow Morning ... bright and early. Well, not tooo awful early, just at 9:30 ... I know myself well enough to not schedule anything earlier than that.
I learned the hard way when I was pregnant with Samuel and had a 8 am computer concepts class and 7 am Piano lab ... um ... Nope ...wasn't at school for either of them ... I was over the funny white thing in the bathroom that I stuck my face in every morning that a face was never meant to be.
So, morning classes ... YES .. EARLY morning classes ... not on my life. Miss Night Owl has learned a few things over the years.
I have Developmental Psychology Mondays and Wednesdays from 9:30 to 10:50
then I get to hustle two buildings over to get to
Humanities 2 ... 11:00 to 11:50 ... Monday Wednesday and Friday.
Fridays are nice, it's my only time.
Then, from 12 to 1 is ..what my family has teasingly called "my sacred hour"
My friend Teresa has no classes from 12 to 1 MWF ... and we, for the first time in 4 years will have time to sit and visit for an hour ...and Heaven help the family member that tries to interfere with that time! (Especially the family member who is on campus with me during that time and fancies himself friends with Teresa as well)
Although, one of Samuel's best friends from church also has a break in his schedule at that time, so I'm guessing Teresa and I will be safe from Samuel shannannigans.
Tuesday's and Thursdays I take Physical Science and Algebra.
oh the dreaded algebra. Why oh why did My mother let me dig in my heels as a 15 year old?
All is water under the bridge now, I must face the music and take it.
Physical Science is from 9:30 to 10:50 Tuesday and Thursday. Then the lab for Pys sci is on Tuesday only from 11:00 to 1:30 (No break between them except to change class rooms)
Then my algebra is 2:30 to 3:50. Tuesday and Thursday.
Thursday I can come home between classes ... Tuesdays I'll be stuck there all day, with barely an hour to catch lunch at 2:30.
After I finish visiting with Teresa ... (and i'm fully recovered from this cough) I will go spend and hour or so in the gym MWF and at some point on Thursdays.)
I'll get an hour PE credit (required credit) but by doing it this way ... I don't enroll in a PE class ..and i get the credit for it! Since I was planning on doing it anyway ... hey hey!
I had tried to talk Teresa into going and working out with me, but alas ...
I am hoping that Samuel's friend from church talks Samuel into using that hour at the gym....
All in all ... most of my books purchased (yeouch ... $425 for 3 classes?)
and all my supplies ... and ...
Now all I have to do is stay healthy ...and concentrate ...and ... keep putting one foot in front of the other till it's done.
Going to see how this function works
Multiple Student Schedules are displayed if your enrolled courses have different begin and end dates. Classes which have not yet been scheduled or have time conflicts are listed below the schedule.
Peggikaye Eagler
Fall 2008 Credit Classes
16 Week Session: 8/18/2008 to 12/12/2008 Time Monday Tuesday Wednesday Thursday Friday Saturday Sunday
09:00AM
09:30AM PSY -2023 SE 1115 PSC -1114 SE 8244 PSY -2023 SE 1115 PSC -1114 SE 8244
10:00AM PSY -2023 SE 1115 PSC -1114 SE 8244 PSY -2023 SE 1115 PSC -1114 SE 8244
10:30AM PSY -2023 SE 1115 PSC -1114 SE 8244 PSY -2023 SE 1115 PSC -1114 SE 8244
11:00AM HUM -2223 SE 3111 PSC -1114 SE 8176 HUM -2223 SE 3111 HUM -2223 SE 3111
11:30AM HUM -2223 SE 3111 PSC -1114 SE 8176 HUM -2223 SE 3111 HUM -2223 SE 3111
12:00PM PSC -1114 SE 8176
12:30PM PSC -1114 SE 8176
01:00PM
01:30PM
02:00PM MTH -0013 SE 8241 MTH -0013 SE 8241
02:30PM MTH -0013 SE 8241 MTH -0013 SE 8241
03:00PM MTH -0013 SE 8241 MTH -0013 SE 8241
03:30PM
I learned the hard way when I was pregnant with Samuel and had a 8 am computer concepts class and 7 am Piano lab ... um ... Nope ...wasn't at school for either of them ... I was over the funny white thing in the bathroom that I stuck my face in every morning that a face was never meant to be.
So, morning classes ... YES .. EARLY morning classes ... not on my life. Miss Night Owl has learned a few things over the years.
I have Developmental Psychology Mondays and Wednesdays from 9:30 to 10:50
then I get to hustle two buildings over to get to
Humanities 2 ... 11:00 to 11:50 ... Monday Wednesday and Friday.
Fridays are nice, it's my only time.
Then, from 12 to 1 is ..what my family has teasingly called "my sacred hour"
My friend Teresa has no classes from 12 to 1 MWF ... and we, for the first time in 4 years will have time to sit and visit for an hour ...and Heaven help the family member that tries to interfere with that time! (Especially the family member who is on campus with me during that time and fancies himself friends with Teresa as well)
Although, one of Samuel's best friends from church also has a break in his schedule at that time, so I'm guessing Teresa and I will be safe from Samuel shannannigans.
Tuesday's and Thursdays I take Physical Science and Algebra.
oh the dreaded algebra. Why oh why did My mother let me dig in my heels as a 15 year old?
All is water under the bridge now, I must face the music and take it.
Physical Science is from 9:30 to 10:50 Tuesday and Thursday. Then the lab for Pys sci is on Tuesday only from 11:00 to 1:30 (No break between them except to change class rooms)
Then my algebra is 2:30 to 3:50. Tuesday and Thursday.
Thursday I can come home between classes ... Tuesdays I'll be stuck there all day, with barely an hour to catch lunch at 2:30.
After I finish visiting with Teresa ... (and i'm fully recovered from this cough) I will go spend and hour or so in the gym MWF and at some point on Thursdays.)
I'll get an hour PE credit (required credit) but by doing it this way ... I don't enroll in a PE class ..and i get the credit for it! Since I was planning on doing it anyway ... hey hey!
I had tried to talk Teresa into going and working out with me, but alas ...
I am hoping that Samuel's friend from church talks Samuel into using that hour at the gym....
All in all ... most of my books purchased (yeouch ... $425 for 3 classes?)
and all my supplies ... and ...
Now all I have to do is stay healthy ...and concentrate ...and ... keep putting one foot in front of the other till it's done.
Going to see how this function works
Multiple Student Schedules are displayed if your enrolled courses have different begin and end dates. Classes which have not yet been scheduled or have time conflicts are listed below the schedule.
Peggikaye Eagler
Fall 2008 Credit Classes
16 Week Session: 8/18/2008 to 12/12/2008 Time Monday Tuesday Wednesday Thursday Friday Saturday Sunday
09:00AM
09:30AM PSY -2023 SE 1115 PSC -1114 SE 8244 PSY -2023 SE 1115 PSC -1114 SE 8244
10:00AM PSY -2023 SE 1115 PSC -1114 SE 8244 PSY -2023 SE 1115 PSC -1114 SE 8244
10:30AM PSY -2023 SE 1115 PSC -1114 SE 8244 PSY -2023 SE 1115 PSC -1114 SE 8244
11:00AM HUM -2223 SE 3111 PSC -1114 SE 8176 HUM -2223 SE 3111 HUM -2223 SE 3111
11:30AM HUM -2223 SE 3111 PSC -1114 SE 8176 HUM -2223 SE 3111 HUM -2223 SE 3111
12:00PM PSC -1114 SE 8176
12:30PM PSC -1114 SE 8176
01:00PM
01:30PM
02:00PM MTH -0013 SE 8241 MTH -0013 SE 8241
02:30PM MTH -0013 SE 8241 MTH -0013 SE 8241
03:00PM MTH -0013 SE 8241 MTH -0013 SE 8241
03:30PM
Wednesday, August 06, 2008
Marco ... Polo ....
After playing marco polo for several rounds with the post office ..bouncing back to me THREE times ... Zippy finally made it to his destination!
He's in California with Doc Gurly! Check it out, he's having a blast out there!
He's in California with Doc Gurly! Check it out, he's having a blast out there!
Saturday, August 02, 2008
Fun With Zippy
As I've shared a few times, I had the pleasure of the visit of a little lobster.
He stayed with me for a few weeks while Dr. Rob went on vacation. So I got to take lots and lots and lots of pictures. (almost 100 in total! The last roll got turned in today to the photo lab!)
It was a lot of fun taking Zippy around town and asking people to pose with him. http://picasaweb.google.com/Peggikaye/FunWithZippy/photo#5216268753603093154Taking pictures of some of Tulsa's unique ..um ... landmarks.
(large people?)But it was extra special to me, given that the cause lands near and dear to my heart.
Please take a few minutes and go and read Zippy's website. Start back at the beginning ... start at the first page and see Zippy's start ..and have fun with him ... and then go to Zippy's donation page and make a donation to help fight brain cancer. Then go and purchase some Zippy merchandise that says "Zippy loves kids"
Get the word out that Zippy loves kids!
Because Zippy never again wants to have to sit beside the grave of another child like Kylie's.
He stayed with me for a few weeks while Dr. Rob went on vacation. So I got to take lots and lots and lots of pictures. (almost 100 in total! The last roll got turned in today to the photo lab!) It was a lot of fun taking Zippy around town and asking people to pose with him. http://picasaweb.google.com/Peggikaye/FunWithZippy/photo#5216268753603093154Taking pictures of some of Tulsa's unique ..um ... landmarks.
(large people?)But it was extra special to me, given that the cause lands near and dear to my heart. Please take a few minutes and go and read Zippy's website. Start back at the beginning ... start at the first page and see Zippy's start ..and have fun with him ... and then go to Zippy's donation page and make a donation to help fight brain cancer. Then go and purchase some Zippy merchandise that says "Zippy loves kids"
Get the word out that Zippy loves kids!
Because Zippy never again wants to have to sit beside the grave of another child like Kylie's.
Monday, July 28, 2008
Procrastination
I don't know what to say today. I need to say it. This may be long, it may be short, it may be more scattered than any post i've written ... it may be more coherant than anything written. I need to get it out.
My heart is broken, shattered and torn. A friend, who I loved more than I realized ... passed away yesterday. She was a beautiful, tiny red headed woman. Strong, and quietly fierce. If you didn't know, you'd never know she was suffering ...daily. She humbly wrote it off.
She was married, with 2 sons, both in the same grades as my sons. We started to the same church at about the same time. Our youngest sons were in kindergarten. Tiny little things ... still waddling when they walked. The way kids who are not still toddlers but not quite yet 'children' do.
A few years later, our boys would go to church camp for the first time together ...and our older boys grew up together in children's church ..and graduated together into youth group .. and now, they've both graduated from high school. Her son has gone into the miliatary, and mine to college. Both fine young men.
Our husbands have both gone through some remarkable changes over the years, scarcely the men that they were when they first shook hands. Her husband, probably doesn't know that he's partly responsible for my husband's return to church life after a 15 year absence. His graceful, loving, and caring acceptance of who Don was, where he was ..without an expectations of anything OF him ... helped Don to see church as a place that he could go and be a part of again. This, ultimately led to the healing of our marriage. Her husband has no idea of the role he played in that.
Over the years, we were in a small group together, her husband and i spent 7 years in the worship team together (me 8 years, him 7 of those 8). We both served as adult volunteers in the youth group ... and they hosted many many parties for the youth group!
Many times, she would be in the hospital, I'd go to see her ... or me, and they'd either call or come to see me. Between the 2 of us, we kept our pastor hopping, that's for sure!
But like Don, we knew, that what she had, could take her life ... we knew that her father had died young ... and she might not make it. That gave her husband and I a special bond.
Her husband, like me, is a poet. Another thing we bonded on. Her husband and I got published together, the same week in a local publications with our poetry. It was so fun for the 4 of us to read that together at a church Thanksgiving Dinner.
With each surgery, we knew that it was a risk, and we held our breath and prayed. The silent panic we kept down with prayer and supplications ... not this time God! PLEASE NOT THIS TIME!
The same prayer i pray every time my husband gets sick.
Last year, when Don was sick, they weren't around and i never thought to tell them. So when they started to come back to church and found him using a walker with oxygen, they were a just a bit alarmed. It was hard to explain to these people who cared so much for us, what had happened and we hadn't let them know.
While we'd been building our house, she'd been in the hospital in Dallas for most of that time ..she didn't get to see it. I kept meaning to invite her over ...
but something about her was special .. . ..
I didn't want her to just SEE the house, I wanted her to see the completed house ... with all the paintings and decorations that everyone had given us, up on the walls ...and you see ... almost 2 years later, I still have white, blank walls.
Not a nail has been put in the wall. I've had my reasons. Health, Don's situation, need help ... this or that ... but I've put off inviting my friend over till it was 'done' then I'd have them over for dinner.
But yesterday, she passed away. Without ever seeing my house. She'd have rather seen it with the blank walls ...she even told me so once. She told me she couldn't wait to see it and I told her 'let me get the paintings hung, let me get it perfect'.
I knew she didn't care, but I wanted it perfect for her.
If only I'd not procrastinated ...
she's gone and the white walls are still here.
My heart is broken, shattered and torn. A friend, who I loved more than I realized ... passed away yesterday. She was a beautiful, tiny red headed woman. Strong, and quietly fierce. If you didn't know, you'd never know she was suffering ...daily. She humbly wrote it off.
She was married, with 2 sons, both in the same grades as my sons. We started to the same church at about the same time. Our youngest sons were in kindergarten. Tiny little things ... still waddling when they walked. The way kids who are not still toddlers but not quite yet 'children' do.
A few years later, our boys would go to church camp for the first time together ...and our older boys grew up together in children's church ..and graduated together into youth group .. and now, they've both graduated from high school. Her son has gone into the miliatary, and mine to college. Both fine young men.
Our husbands have both gone through some remarkable changes over the years, scarcely the men that they were when they first shook hands. Her husband, probably doesn't know that he's partly responsible for my husband's return to church life after a 15 year absence. His graceful, loving, and caring acceptance of who Don was, where he was ..without an expectations of anything OF him ... helped Don to see church as a place that he could go and be a part of again. This, ultimately led to the healing of our marriage. Her husband has no idea of the role he played in that.
Over the years, we were in a small group together, her husband and i spent 7 years in the worship team together (me 8 years, him 7 of those 8). We both served as adult volunteers in the youth group ... and they hosted many many parties for the youth group!
Many times, she would be in the hospital, I'd go to see her ... or me, and they'd either call or come to see me. Between the 2 of us, we kept our pastor hopping, that's for sure!
But like Don, we knew, that what she had, could take her life ... we knew that her father had died young ... and she might not make it. That gave her husband and I a special bond.
Her husband, like me, is a poet. Another thing we bonded on. Her husband and I got published together, the same week in a local publications with our poetry. It was so fun for the 4 of us to read that together at a church Thanksgiving Dinner.
With each surgery, we knew that it was a risk, and we held our breath and prayed. The silent panic we kept down with prayer and supplications ... not this time God! PLEASE NOT THIS TIME!
The same prayer i pray every time my husband gets sick.
Last year, when Don was sick, they weren't around and i never thought to tell them. So when they started to come back to church and found him using a walker with oxygen, they were a just a bit alarmed. It was hard to explain to these people who cared so much for us, what had happened and we hadn't let them know.
While we'd been building our house, she'd been in the hospital in Dallas for most of that time ..she didn't get to see it. I kept meaning to invite her over ...
but something about her was special .. . ..
I didn't want her to just SEE the house, I wanted her to see the completed house ... with all the paintings and decorations that everyone had given us, up on the walls ...and you see ... almost 2 years later, I still have white, blank walls.
Not a nail has been put in the wall. I've had my reasons. Health, Don's situation, need help ... this or that ... but I've put off inviting my friend over till it was 'done' then I'd have them over for dinner.
But yesterday, she passed away. Without ever seeing my house. She'd have rather seen it with the blank walls ...she even told me so once. She told me she couldn't wait to see it and I told her 'let me get the paintings hung, let me get it perfect'.
I knew she didn't care, but I wanted it perfect for her.
If only I'd not procrastinated ...
she's gone and the white walls are still here.
Sunday, July 27, 2008
Got this great Meme from Ramona. I normally moan when I see meme's come down the pike and and am greatly relieved if my name is not named. (I only get about half the meme's done that I am named at! oops Ms. Moof usually gets her meme's done even though she moans as well) While Dr. Bates didn't tag anyone, I found this one so facinating, I just did it myself, I too, will not be tagging anyone but challenge you to do it as well!
The Big Read is an initiative of the National Endowment for the Arts designed to restore reading to the center of American culture. The NEA presents The Big Read in partnership with the Institute of Museum and Library Services and in cooperation with Arts Midwest.
Still it is interesting to read the "meme list" and see which ones you have read. So here it is:
“The Big Read reckons that the average adult has only read 6 of the top 100 books they’ve printed.”
1) Bold: I have read.
2)italics: Books I love.
3) Reprint this list in your own blog so we can try and track down these people who’ve read 6 and force books upon them ;-)
1. Pride and Prejudice - Jane Austen (oddly enough ...checked this out from the library YESTERDAY!!)
2. The Lord of the Rings - JRR Tolkien
3. Jane Eyre - Charlotte Bronte
4. The Harry Potter Series - JK Rowling
5. To Kill a Mockingbird - Harper Lee
6. The Bible
7 . Wuthering Heights - Emily Bronte
8. Nineteen Eighty Four - George Orwell
9. His Dark Materials – Phillip Pullman
10. Great Expectations – Charles Dickens
11. Little Women - Louisa M Alcott
12. Tess of the D’Urbervilles - Thomas Hardy
13. Catch 22 - Joseph Heller
14 . The Complete works of Shakespeare (Have read many ...but certainly not all)
15. Rebecca - Daphne Du Maurier
16. The Hobbit --J.R.R. Tolkien
17. Birdsong – Sebastian Faulks
18. Catcher in the Rye - JD Salinger
19. The Time Traveler's Wife
20. Middlemarch - George Eliot
21. Gone With The Wind - Margaret Mitchell
22. The Great Gatsby - F Scott Fitzgerald ick ..ugh ..ack!!!
23. Bleak House - Charles Dickens
24. War and Peace - Leo Tolstoy
25. The Hitch Hiker’s Guide to the Galaxy - Douglas Adams (some day, I keep telling myself ...some day ... )
26. Brideshead Revisited – Evelyn Waugh
27. Crime and Punishment - Fyodor Dostoyevsky
28. Grapes of Wrath - John Steinbeck (high school assignment ..barely remember it ..never saw the movie)
29. Alice in Wonderland - Lewis Carroll
30 . The Wind in the Willows - Kenneth Grahame
31. Anna Karenina - Leo Tolstoy
32. David Copperfield – Charles Dickens
33. Chronicles of Narnia - CS Lewis (um, this is 7 books and I've read them each about 20 times, I used to read them once a year)
34 . Emma - Jane Austen
35. Persuasion - Jane Austen
36. The Lion, The Witch and The Wardrobe - CS Lewis (mmm if I've read the chronicals of narnia, by default, I've read this one)
37. The Kite Runner - Khaled Hosseini
38. Captain Corelli’s Mandolin - Louis De Bernieres
39. Memoirs of a Geisha - Arthur Golden
40. Winnie the Pooh - AA Milne
41. Animal Farm - George Orwell
42. The Da Vinci Code - Dan Brown
43. One Hundred Years of Solitude - Gabriel Garcia Marquez
44. A Prayer for Owen Meaney - John Irving
45. The Woman in White - Wilkie Collins
46. Anne of Green Gables - LM Montgomery
47. Far From The Madding Crowd - Thomas Hardy
48. The Handmaid’s Tale - Margaret Atwood
49. Lord of the Flies – William Golding
50. Atonement - Ian McEwan
51. Life of Pi - Yann Martel
52. Dune- Frank Herbert
53. Cold Comfort Farm - Stella Gibbons
54. Sense and Sensibility - Jane Austen (also checked this out yesterday from the library!!)
55. A Suitable Boy - Vikram Seth
56. The Shadow of the Wind - Carlos Ruiz Zafon
57. A Tale Of Two Cities - Charles Dickens
59. The Curious Incident of the Dog in the Night-time - Mark Haddon
60. Love In The Time Of Cholera - Gabriel Garcia Marquez
61. Of Mice and Men - John Steinbeck
62. Lolita - Vladimir Nabokov
63. The Secret History - Donna Tartt
64. The Lovely Bones - Alice Sebold
65. Count of Monte Cristo - Alexandre Dumas (I can remember having this, and sitting with it open ..but I honestly can't remember if I read it or not!!)
66. On The Road - Jack Kerouac
67. Jude the Obscure - Thomas Hardy
68. Bridget Jones’s Diary - Helen Fielding
69. Midnight’s Children - Salman Rushdie
70. Moby Dick – Herman Melville ( I bartered my way out of reading this in high school ...sue me)
71. Oliver Twist - Charles Dickens
72. Dracula - Bram Stoker
73. The Secret Garden - Frances Hodgson Burnett
74. Notes From A Small Island - Bill Bryson
75. Ulysses - James Joyce
76. The Bell Jar - Sylvia Plath
77. Swallows and Amazons
78. Germinal - Emile Zola
79. Vanity Fair - William Makepeace Thackeray
80. Possession - AS Byatt
81. A Christmas Carol - Charles Dickens (better read than ANY movie production of it!!)
82 Cloud Atlas - David Mitchell
83. The Color Purple - Alice Walker
84. The Remains of the Day - Kazuo Ishiguro
85. Madame Bovary - Gustave Flaubert
86. A Fine Balance - Rohinton Mistry
87. Charlotte’s Web - EB White
88. The Five People You Meet In Heaven – Mitch Albom (another one I keep saying I'm going to)
89. Adventures of Sherlock Holmes - Sir Arthur Conan Doyle
90. The Faraway Tree Collection – Enid Blyton
91. Heart of Darkness - Joseph Conrad
92. The Little Prince – Antoine de St. Exupery
93. The Wasp Factory – Iain Banks
94. Watership Down - Richard Adams
95. A Confederacy of Dunces – John Kennedy Toole
96. A Town like Alice- Nevil Shute
97. The Three Musketeers - Alexandre Dumas
98. Hamlet- William Shakespeare
99. Charlie and the Chocolate Factory - Roald Dahl
100. Les Miserables – Victor Hugo
I would also recommend Little Men. Anyone who loved Little Women, should read Little Men.
This list reminds me of all the must reads on my list ... and just as I'm getting to bury myself in school work o.O
Anything by CS Lewis,
Randy Alcorn is my second favorite Christian author, but he's been inspired by CS Lewis
Oh ..and then there is always ... Friday Fellowship by Peggikaye Eagler *GRIN*
The Big Read is an initiative of the National Endowment for the Arts designed to restore reading to the center of American culture. The NEA presents The Big Read in partnership with the Institute of Museum and Library Services and in cooperation with Arts Midwest.
Still it is interesting to read the "meme list" and see which ones you have read. So here it is:
“The Big Read reckons that the average adult has only read 6 of the top 100 books they’ve printed.”
1) Bold: I have read.
2)italics: Books I love.
3) Reprint this list in your own blog so we can try and track down these people who’ve read 6 and force books upon them ;-)
1. Pride and Prejudice - Jane Austen (oddly enough ...checked this out from the library YESTERDAY!!)
2. The Lord of the Rings - JRR Tolkien
3. Jane Eyre - Charlotte Bronte
4. The Harry Potter Series - JK Rowling
5. To Kill a Mockingbird - Harper Lee
6. The Bible
7 . Wuthering Heights - Emily Bronte
8. Nineteen Eighty Four - George Orwell
9. His Dark Materials – Phillip Pullman
10. Great Expectations – Charles Dickens
11. Little Women - Louisa M Alcott
12. Tess of the D’Urbervilles - Thomas Hardy
13. Catch 22 - Joseph Heller
14 . The Complete works of Shakespeare (Have read many ...but certainly not all)
15. Rebecca - Daphne Du Maurier
16. The Hobbit --J.R.R. Tolkien
17. Birdsong – Sebastian Faulks
18. Catcher in the Rye - JD Salinger
19. The Time Traveler's Wife
20. Middlemarch - George Eliot
21. Gone With The Wind - Margaret Mitchell
22. The Great Gatsby - F Scott Fitzgerald ick ..ugh ..ack!!!
23. Bleak House - Charles Dickens
24. War and Peace - Leo Tolstoy
25. The Hitch Hiker’s Guide to the Galaxy - Douglas Adams (some day, I keep telling myself ...some day ... )
26. Brideshead Revisited – Evelyn Waugh
27. Crime and Punishment - Fyodor Dostoyevsky
28. Grapes of Wrath - John Steinbeck (high school assignment ..barely remember it ..never saw the movie)
29. Alice in Wonderland - Lewis Carroll
30 . The Wind in the Willows - Kenneth Grahame
31. Anna Karenina - Leo Tolstoy
32. David Copperfield – Charles Dickens
33. Chronicles of Narnia - CS Lewis (um, this is 7 books and I've read them each about 20 times, I used to read them once a year)
34 . Emma - Jane Austen
35. Persuasion - Jane Austen
36. The Lion, The Witch and The Wardrobe - CS Lewis (mmm if I've read the chronicals of narnia, by default, I've read this one)
37. The Kite Runner - Khaled Hosseini
38. Captain Corelli’s Mandolin - Louis De Bernieres
39. Memoirs of a Geisha - Arthur Golden
40. Winnie the Pooh - AA Milne
41. Animal Farm - George Orwell
42. The Da Vinci Code - Dan Brown
43. One Hundred Years of Solitude - Gabriel Garcia Marquez
44. A Prayer for Owen Meaney - John Irving
45. The Woman in White - Wilkie Collins
46. Anne of Green Gables - LM Montgomery
47. Far From The Madding Crowd - Thomas Hardy
48. The Handmaid’s Tale - Margaret Atwood
49. Lord of the Flies – William Golding
50. Atonement - Ian McEwan
51. Life of Pi - Yann Martel
52. Dune- Frank Herbert
53. Cold Comfort Farm - Stella Gibbons
54. Sense and Sensibility - Jane Austen (also checked this out yesterday from the library!!)
55. A Suitable Boy - Vikram Seth
56. The Shadow of the Wind - Carlos Ruiz Zafon
57. A Tale Of Two Cities - Charles Dickens
59. The Curious Incident of the Dog in the Night-time - Mark Haddon
60. Love In The Time Of Cholera - Gabriel Garcia Marquez
61. Of Mice and Men - John Steinbeck
62. Lolita - Vladimir Nabokov
63. The Secret History - Donna Tartt
64. The Lovely Bones - Alice Sebold
65. Count of Monte Cristo - Alexandre Dumas (I can remember having this, and sitting with it open ..but I honestly can't remember if I read it or not!!)
66. On The Road - Jack Kerouac
67. Jude the Obscure - Thomas Hardy
68. Bridget Jones’s Diary - Helen Fielding
69. Midnight’s Children - Salman Rushdie
70. Moby Dick – Herman Melville ( I bartered my way out of reading this in high school ...sue me)
71. Oliver Twist - Charles Dickens
72. Dracula - Bram Stoker
73. The Secret Garden - Frances Hodgson Burnett
74. Notes From A Small Island - Bill Bryson
75. Ulysses - James Joyce
76. The Bell Jar - Sylvia Plath
77. Swallows and Amazons
78. Germinal - Emile Zola
79. Vanity Fair - William Makepeace Thackeray
80. Possession - AS Byatt
81. A Christmas Carol - Charles Dickens (better read than ANY movie production of it!!)
82 Cloud Atlas - David Mitchell
83. The Color Purple - Alice Walker
84. The Remains of the Day - Kazuo Ishiguro
85. Madame Bovary - Gustave Flaubert
86. A Fine Balance - Rohinton Mistry
87. Charlotte’s Web - EB White
88. The Five People You Meet In Heaven – Mitch Albom (another one I keep saying I'm going to)
89. Adventures of Sherlock Holmes - Sir Arthur Conan Doyle
90. The Faraway Tree Collection – Enid Blyton
91. Heart of Darkness - Joseph Conrad
92. The Little Prince – Antoine de St. Exupery
93. The Wasp Factory – Iain Banks
94. Watership Down - Richard Adams
95. A Confederacy of Dunces – John Kennedy Toole
96. A Town like Alice- Nevil Shute
97. The Three Musketeers - Alexandre Dumas
98. Hamlet- William Shakespeare
99. Charlie and the Chocolate Factory - Roald Dahl
100. Les Miserables – Victor Hugo
I would also recommend Little Men. Anyone who loved Little Women, should read Little Men.
This list reminds me of all the must reads on my list ... and just as I'm getting to bury myself in school work o.O
Anything by CS Lewis,
Randy Alcorn is my second favorite Christian author, but he's been inspired by CS Lewis
Oh ..and then there is always ... Friday Fellowship by Peggikaye Eagler *GRIN*
Wednesday, July 09, 2008
The Monkey chases the weasel
I would have said here we go round the mulberry bush ...but I think I've titled a post that before ... so I did the next best thing.
So ... insurance merry go rounds. UGH.
They've decided that Cellcept is only good for transplant patients.
Um ...ok.
EReruh um uh ... except that
Cellcept is used in
Lupus
Rheumatoid Arthritis
Chrohns Disease
Myasthenia Gravis
and a few other autoimmune diseases.
It is used ... because it is .. SIGNIFICANTLY SAFER ... and SIGNFICANTLY more effective at working on autoimmune diseases ...without causing QUITE the immunosuppression of Imuran (therefore causing less risk of infection).
Don't get me wrong ... Cellcept *IS* an immunosuppression ... it *does* come with the risk of infections ... it does come with the suppressed immune system so the body is at risk of developing certain cancers (cancer is an cell that mutates when the bodies immune system doesn't properly fight it).
However, because of the chemical make up of Cellcept ... it doesn't do it in the same way as Imuran and has proven to be safer and do the same job ...
While the risks are the same, they are LESS risky.
So ...less risky and more effective .... who wouldn't use that drug?
Insurance companies.
Immunosuppression therapies have been used for 25 or more years in treatment for Myasthenia Gravis. I know this ...because I've been on it for 16 years ... and I had a friend who'd been on it for well over 15 years at the time that I was diagnosed. I *think* she had said 20, but since she's passed away (Actually from complications from Imuran) I can't ask her if it was 15 or 20, so we'll say 15.
While I was on Imuran ...
I wore leg braces because my foot drop was so bad. I could not walk up a flight of stairs ... I often needed help dressing and choking was a normal every day occurance. I LOOKED .. like a Myasthenic on a daily basis not just when I over did it.
My insurance has decided that the reasearch doesn't prove that Cellcept is effective enough for autoimmunity ... and therefore is only to be used in transplants (even worse, Kidney transplants only)
I am now going back onto Imuran. I knew it was coming, been fighting with insurance for months and I knew I was loosing, but I've lost ... and today, i was handed the script for Imuran. I feel like I'm taking 10 steps back ... just when I'm headed back to school and will need every single ounce of strength and energy I can muster.
My prayer is that Cellcept will have brought enough HEALING to the muscles and immune system that the Imuran will allow me to maintain status quo ... maybe that with the prednisone and plaquenil that I take for the lupus ... it will be more effective this time?
Why do insurance companies think it's ok to use a far more risky, less effective medication, that has been proven in a patient to BE less effective ... on the simple fact that they are simply saying 'nope, we only use it for kidney transplants'
When immunosuppression has been standard of care for a diseases for a quarter of a century?
How can they mess with my life like that? The idea of paying for it myself would be nice ... if the cost of a monthly supply was not literally more than my monthly income. A friend who has had a kidney transplant his insurance copay ... is $250 (they pay 20% of their drug, you do the math) (although My insurance was getting it for $2100 so they may be getting ripped off)
The reality is .. it that's what it comes down to ... Imuran is about $250 and Cellcept is $2000
the fact that it's not as safe of a drug has nothing to do with it ... does it.
So ... insurance merry go rounds. UGH.
They've decided that Cellcept is only good for transplant patients.
Um ...ok.
EReruh um uh ... except that
Cellcept is used in
Lupus
Rheumatoid Arthritis
Chrohns Disease
Myasthenia Gravis
and a few other autoimmune diseases.
It is used ... because it is .. SIGNIFICANTLY SAFER ... and SIGNFICANTLY more effective at working on autoimmune diseases ...without causing QUITE the immunosuppression of Imuran (therefore causing less risk of infection).
Don't get me wrong ... Cellcept *IS* an immunosuppression ... it *does* come with the risk of infections ... it does come with the suppressed immune system so the body is at risk of developing certain cancers (cancer is an cell that mutates when the bodies immune system doesn't properly fight it).
However, because of the chemical make up of Cellcept ... it doesn't do it in the same way as Imuran and has proven to be safer and do the same job ...
While the risks are the same, they are LESS risky.
So ...less risky and more effective .... who wouldn't use that drug?
Insurance companies.
Immunosuppression therapies have been used for 25 or more years in treatment for Myasthenia Gravis. I know this ...because I've been on it for 16 years ... and I had a friend who'd been on it for well over 15 years at the time that I was diagnosed. I *think* she had said 20, but since she's passed away (Actually from complications from Imuran) I can't ask her if it was 15 or 20, so we'll say 15.
While I was on Imuran ...
I wore leg braces because my foot drop was so bad. I could not walk up a flight of stairs ... I often needed help dressing and choking was a normal every day occurance. I LOOKED .. like a Myasthenic on a daily basis not just when I over did it.
My insurance has decided that the reasearch doesn't prove that Cellcept is effective enough for autoimmunity ... and therefore is only to be used in transplants (even worse, Kidney transplants only)
I am now going back onto Imuran. I knew it was coming, been fighting with insurance for months and I knew I was loosing, but I've lost ... and today, i was handed the script for Imuran. I feel like I'm taking 10 steps back ... just when I'm headed back to school and will need every single ounce of strength and energy I can muster.
My prayer is that Cellcept will have brought enough HEALING to the muscles and immune system that the Imuran will allow me to maintain status quo ... maybe that with the prednisone and plaquenil that I take for the lupus ... it will be more effective this time?
Why do insurance companies think it's ok to use a far more risky, less effective medication, that has been proven in a patient to BE less effective ... on the simple fact that they are simply saying 'nope, we only use it for kidney transplants'
When immunosuppression has been standard of care for a diseases for a quarter of a century?
How can they mess with my life like that? The idea of paying for it myself would be nice ... if the cost of a monthly supply was not literally more than my monthly income. A friend who has had a kidney transplant his insurance copay ... is $250 (they pay 20% of their drug, you do the math) (although My insurance was getting it for $2100 so they may be getting ripped off)
The reality is .. it that's what it comes down to ... Imuran is about $250 and Cellcept is $2000
the fact that it's not as safe of a drug has nothing to do with it ... does it.
Thursday, June 26, 2008
Zippy's Adventures in Oklahoma
We've had a lot of fun in Tulsa and Broken Arrow.
Zippy came and met the cats and the new puppy Hershey. Even camera shy Twitch allowed a picture with Zippy! That is one popular Lobster!!
The boys took Zippy to Bass Pro Shop. Zippy had a lot of fun playing with the animals ..he really liked scaring the black bear! He was a bit annoyed that the picture of the bison didn't come out. I can't say as I blame him. Come all the way to Oklahoma and pose with a Buffalo and Samuel forgets to use a flash! Hmm I told him that's teenagers for you!
I took him to see the Arkansas River, after I convinced him that it really WAS the same river he'd seen in Arkansas, he was really impressed.
We also saw The Golden Driller and met my Pharmacist. He was more than happy to pose with Zippy. He was really proud of Zippy for all the work he's doing for raising money for research for pediatric brain cancer.
Yesterday, I took him by the gravesite of my friends daughter. Zippy was very saddened by that, but realized that was why he does all the traveling he does. He doesn't want one more family to have to bury their child from that awful disease.
Today (no pictures yet) we went to ORU and saw the praying hands. Zippy really isn't sure what to think of that. I told him that it was ok, because no one in Tulss is sure of what to think of those either, no matter what their beliefs are.
We went to the top of the Cityplex tower and looked down. top of 60 floors and Zippy said "WHOA Lobsters don't belong this high!"
We took pictures with my favorite Dj's! They let me back while they were on the air!!
They thought Zippy was the neatest thing! I even got a free CD out of it!
I would have let Zippy tell the story, but right now Zippy is sleeping.
He'll tell the rest of the story when we get the rest of the pictures up.
Wednesday, June 18, 2008
Zippy has arrived.
Zippy got here today.
Hot, and tired after his long journey. Greeted by a hyperactive puppy. He wanted to be sure that the puppy was not able to get to him. I assured him that we would keep the puppy, Hershey away from him.
Hershey was sure she could get help from someone getting closer. She didn't.
Taking Zippy on a quick tour of the yard, I told him the tree in the front yard didn't belong. It was a sore spot with us. He offered to chop it down.
I told him not to feel bad. We never watered it, and the ice storm didn't kill it. It's indestructible.
Inside the cool house, Zippy immediately was relieved to feel the air conditioner in the Oklahoma heat and humidity!
First to meet him was Samuel
Camera shy Twitch met Zippy and even posed for the camera!
Better official pictures will come ..but our digital camera is a little cheapie!
Hot, and tired after his long journey. Greeted by a hyperactive puppy. He wanted to be sure that the puppy was not able to get to him. I assured him that we would keep the puppy, Hershey away from him.
Hershey was sure she could get help from someone getting closer. She didn't.
Taking Zippy on a quick tour of the yard, I told him the tree in the front yard didn't belong. It was a sore spot with us. He offered to chop it down.
I told him not to feel bad. We never watered it, and the ice storm didn't kill it. It's indestructible.
Inside the cool house, Zippy immediately was relieved to feel the air conditioner in the Oklahoma heat and humidity!
First to meet him was Samuel
Camera shy Twitch met Zippy and even posed for the camera!
Better official pictures will come ..but our digital camera is a little cheapie!
Monday, June 16, 2008
Hershey
This is for Mary ...
HERSHEY! My chin is not a chew toy!! (as you can see, there is quite a bit of chin for him to chew on!)
Sunday, June 15, 2008
Fun With Zippy!
In a day or two, I will have a new arrival in my household.
Zippy, the Lobster will be coming to visit me.
Zippy has been with Ramona in Arkansas, and having quite a lot of fun.
Zippy, isn't just any lobster. He is a LOBSTER.
He's traveling around the world to med bloggers to help raise funds for research for pediatric brain cancer.
As anyone who's read my blog for while knows, this is a particularly close subject to my heart. (posts not in order of Kylie's illness)
Please, please visit this page to donate to Zippy's cause. The Kylie's of this world need you. The people who are left behind, like Tyler and Brenden (her brothers) and her mother Teresa, need you as well. As do her friends.
Zippy, the Lobster will be coming to visit me.
Zippy has been with Ramona in Arkansas, and having quite a lot of fun.
Zippy, isn't just any lobster. He is a LOBSTER.
He's traveling around the world to med bloggers to help raise funds for research for pediatric brain cancer.
As anyone who's read my blog for while knows, this is a particularly close subject to my heart. (posts not in order of Kylie's illness)
Please, please visit this page to donate to Zippy's cause. The Kylie's of this world need you. The people who are left behind, like Tyler and Brenden (her brothers) and her mother Teresa, need you as well. As do her friends.
Friday, June 13, 2008
Cold.
I just wrote a whole post ...and second guessed myself.
I don't do that often ... but occassionally I do.
I want to post about why I'm not in therapy anymore ..and what happened. Each time I go to do it, I stop myself. It wasn't my idea, nor the idea of my therapist, but rather, a rather sudden decision of the eating disorder clinic. Based on the actions of someone no longer involved in my treatment.
I always start to post, because it's such a hot topic to me ..then wonder what would happen to my therapist if something happened because of my post. It wasn't fair that I was removed from her care ...so much so, that in the meeting with the clinic director, herself and me ..she kept using the phrase "Patient abandonment" while he kept shooting her visual darts that if looks could kill, she'd not have survived the hour.
It was such a hot topic that it left me unwilling to see another therapist ..at all.
And yet ... I'm going back to school to become a psychologist. How ironic is that?
Granted, I'm going to do child psychology, not therapy for adults with issues such as eating disorders, PTSD, or any such issues ...but still.
Part of me left the office that day (ironically, April 1) determined that it would be the end of the eating disorder, therefore, it wouldn't matter. How I thought I'd accomplish that feat after years of not being able to, I've no idea. My recent blood test still showed a protein defieciency ... constant cold ..very cold ..docs answer ..nutrition. Stomach pain ... possible scar tissue from gallbladder surgery (having scan on Monday) but most likely caused from not eating enough over last year and a half. (not real sure how that one works ...) Metformin started ... bothers me ..called endo ... answer "increase calories to 1500, then if it still bothers, call back" DAGNABIT! Does everything come down to nutrition with me ..and why can't 800 to 1000 be enough (technically, I know the answer that remains, significantly beside the point.)
So I wonder ... will I ever have the courage to fully write about the events of April 1, 2008 ... or about what is really involved in my eating disorder. The first, I'm not sure I have the *right* to write about on a public blog, the second, I wonder ...maybe I have the responsibility of writing about ..at least some day.
I don't do that often ... but occassionally I do.
I want to post about why I'm not in therapy anymore ..and what happened. Each time I go to do it, I stop myself. It wasn't my idea, nor the idea of my therapist, but rather, a rather sudden decision of the eating disorder clinic. Based on the actions of someone no longer involved in my treatment.
I always start to post, because it's such a hot topic to me ..then wonder what would happen to my therapist if something happened because of my post. It wasn't fair that I was removed from her care ...so much so, that in the meeting with the clinic director, herself and me ..she kept using the phrase "Patient abandonment" while he kept shooting her visual darts that if looks could kill, she'd not have survived the hour.
It was such a hot topic that it left me unwilling to see another therapist ..at all.
And yet ... I'm going back to school to become a psychologist. How ironic is that?
Granted, I'm going to do child psychology, not therapy for adults with issues such as eating disorders, PTSD, or any such issues ...but still.
Part of me left the office that day (ironically, April 1) determined that it would be the end of the eating disorder, therefore, it wouldn't matter. How I thought I'd accomplish that feat after years of not being able to, I've no idea. My recent blood test still showed a protein defieciency ... constant cold ..very cold ..docs answer ..nutrition. Stomach pain ... possible scar tissue from gallbladder surgery (having scan on Monday) but most likely caused from not eating enough over last year and a half. (not real sure how that one works ...) Metformin started ... bothers me ..called endo ... answer "increase calories to 1500, then if it still bothers, call back" DAGNABIT! Does everything come down to nutrition with me ..and why can't 800 to 1000 be enough (technically, I know the answer that remains, significantly beside the point.)
So I wonder ... will I ever have the courage to fully write about the events of April 1, 2008 ... or about what is really involved in my eating disorder. The first, I'm not sure I have the *right* to write about on a public blog, the second, I wonder ...maybe I have the responsibility of writing about ..at least some day.
Monday, June 09, 2008
A Thank You and A Why
Recently, I mentioned that it had been recommended to me to wear an eye patch when I get fatiqued (because of double vision) but that my latex allergy made it difficult to follow through.
Fellow Blogger, and quilter, extraordinaire, Ramona Bates, surprised me by deciding to do something about my problem.
I recieved them last week. I knew that I would use them, but am a little surprised by how much I'm using them. I don't know if I'm just overly tired from over extending myself ...or if the relief they bring is so welcome ... or if they were just that needed. So THANK YOU, Ramona!
Sixteen years ago when I was diagnosed with Myasthenia Gravis, one of the first things they told me was to get an eye patch for the double vision. They also suggested using one to PREVENT double vision.
My neurologist also said that it would decrease overall fatique. I never quite understood that ... but found rather quickly that he was telling the truth.
As I learned about Myasthenia and how muscles work, it started to make more sense to me how and why the eye patches not only help with double vision, preventing it and helping with the fatigue factor.
Myasthenia Gravis is an autoimmune disease that effects the voluntary muscles. If it can be moved, the muscle can be effected. MOST Myasthenics are effected in the eye lids first, then eyes, then it moves down from there.
I was a bit odd, in that my mouth was the first to be effected, my eyes next and then my eye lids came after my whole body was effected. My eyelids are still not all that likely to droop. When they do droop ... I'm in a bit of medical trouble and respiratory issues tend to be right on the heels of my eyelid droop.
There was one time that I was very sick with bronchitis. The doctor wasn't available so I saw a Physicians Assistant that I'd never seen before. He wasn't pleased with my infection, but wasn't really alarmed at my appearance. My husband, wanted him to get my doctor. He kept saying "Look! She's in trouble!"
The PA finally said "She looks like a patient with Myasthenia, she has myasthenia, I don't see the issue."
My husband finally said "PLEASE go tell the doctor what you've just told me."
So he did. The doctor came rushing into the exam room ... to where I got rushed out and admitted into the hospital. He knew that when I LOOKED like a Myasthenic ... I'm in trouble. I wound up with a series of plasmapheresis to pull me out of the crisis.
The double vision I experience, however, is FAR more frequent. Almost daily, if not daily. By anywhere from 7 to 9 pm, I'm getting a bit blurry eyed, by 9 or so, I'm crosseyed. By 11, anyone looking at me can see that my eyes do not track. This, is even on a good day. Get myself tired ...and it happens early ... today ... I woke up with my eyes not tracking. Double vision by about noon. OOPS.
Here is a PDF file from the MGFA That gives coping hints for those with ocular MG (effecting the eyes only. It is usually also given to those with generalized MG.
One of the reasons eyes are so very effected is that, in MG, the more a muscle is used, the weaker it gets. Over use just wears out the muscle. Eyes, almost never get rest ...while awake, they are constantly moving, and changing what they are doing, even subtly. While asleep, they move rapidly during REM ... they simply are a hard working muscle group that the immune system has decided to target.
When double vision happens, you put the eye patch on, and you only are looking out of one eye, which means you are only seeing one image. It allows the covered eye to rest, and to not work as hard. It is VERY important to not keep the eye patch over just one eye, or to wear them all the time or you can actually damage the eye sight. But to give the eyes a break, you can wear one for an hour, then switch it, and the eyes will feel like they've been given a new lease. The facial muslces that help to assist the eyes, stop straining because the eyes don't have to work as hard.
Then because the face is more relaxed, the shoulders and neck tend to not have to work as hard ...and it snow balls into the whole body working more effectively.
It also reminds you to ..um ..er .. take it easy and that you might be a bit beyond your limits if it's too early in the day.
This last friday, I did some deeeeeep cleaning. I got mad at my kids and did 12 loads of THEIR laundry in one day. Then cleaned out my kitchen cabinets, re organizing them. (I get mad, I clean). I also did a few other deep cleaning gems that needed attending to, but could have waited ...or done by teenaged boys.
Then Saturday, I decided that I wanted to try the Butternut squash soup I'd been seeing on Food network ...and I cooked it. It took a good part of the day. I also made a pork shish kabobs. I spent 8 hours total in the kitchen.
I went to pay the Macy's bill ..and found a treat in my car. An abandoned puppy (complete with note! telling me breed and age)!! Which, by the way is Black lab/ Austrailian shephard. She is 8 weeks old. She has stolen our hearts and we've decided to keep her ... so house breaking and playing, and training ensued. Including up in the middle of the night to take her outside. We've named her Hershey.
I thought about making the boys do it, but realized they were leaving for camp on Monday (today) morning ..and figured I might as well do it myself.
Then Sunday, church, where I worked children's ministry and we had a church picnic ... in the sun and heat. Then home to get my kids ready for church camp. Which included a 10 pm run to walmart to get last minute stuff ..and struggling to get them to pack at midnight.
This morning started out at 7 am ... to finish running to get stuff they hadn't remembered they needed and didn't have (bathing suit!) and to get an umbrella because I don't own one ...and well ..housebreaking in the rain.
All that ...and my eyes are in desperate need of those patches!! I asked my son to take a picture of me wearing them. I put on a big smile and then took them to camp. Finally got them opened and was shocked to see ... my smile! Where is it???
MG strikes again!
So, while I look like I'm not smiling ... I am, it's an MG thing. The muscles are worn out.
Here is a picture of me back in February with a friend. I wasn't as tired, and you can see the difference in my smile
June is Myasthenia Gravis Awareness Month. Famous Myasthenics are Aristotle Onasis and Roger Smith (Ann Margaret's husband). There is also a soap opera actress who has it, as well as her character, but I never can remember who. There have been a couple of football coaches with it ..and a couple of years ago, a college football player found out he had it mid season!
So, now that I've posted ...and kids are tucked away in southern oklahoma at camp .. and Hershey is having fun with Don ... I think, I will tuck myself into bed. Thank you, again Ramona!
Fellow Blogger, and quilter, extraordinaire, Ramona Bates, surprised me by deciding to do something about my problem.
I recieved them last week. I knew that I would use them, but am a little surprised by how much I'm using them. I don't know if I'm just overly tired from over extending myself ...or if the relief they bring is so welcome ... or if they were just that needed. So THANK YOU, Ramona!
Sixteen years ago when I was diagnosed with Myasthenia Gravis, one of the first things they told me was to get an eye patch for the double vision. They also suggested using one to PREVENT double vision.
My neurologist also said that it would decrease overall fatique. I never quite understood that ... but found rather quickly that he was telling the truth.
As I learned about Myasthenia and how muscles work, it started to make more sense to me how and why the eye patches not only help with double vision, preventing it and helping with the fatigue factor.
Myasthenia Gravis is an autoimmune disease that effects the voluntary muscles. If it can be moved, the muscle can be effected. MOST Myasthenics are effected in the eye lids first, then eyes, then it moves down from there.
I was a bit odd, in that my mouth was the first to be effected, my eyes next and then my eye lids came after my whole body was effected. My eyelids are still not all that likely to droop. When they do droop ... I'm in a bit of medical trouble and respiratory issues tend to be right on the heels of my eyelid droop.
There was one time that I was very sick with bronchitis. The doctor wasn't available so I saw a Physicians Assistant that I'd never seen before. He wasn't pleased with my infection, but wasn't really alarmed at my appearance. My husband, wanted him to get my doctor. He kept saying "Look! She's in trouble!"
The PA finally said "She looks like a patient with Myasthenia, she has myasthenia, I don't see the issue."
My husband finally said "PLEASE go tell the doctor what you've just told me."
So he did. The doctor came rushing into the exam room ... to where I got rushed out and admitted into the hospital. He knew that when I LOOKED like a Myasthenic ... I'm in trouble. I wound up with a series of plasmapheresis to pull me out of the crisis.
The double vision I experience, however, is FAR more frequent. Almost daily, if not daily. By anywhere from 7 to 9 pm, I'm getting a bit blurry eyed, by 9 or so, I'm crosseyed. By 11, anyone looking at me can see that my eyes do not track. This, is even on a good day. Get myself tired ...and it happens early ... today ... I woke up with my eyes not tracking. Double vision by about noon. OOPS.
Here is a PDF file from the MGFA That gives coping hints for those with ocular MG (effecting the eyes only. It is usually also given to those with generalized MG.
One of the reasons eyes are so very effected is that, in MG, the more a muscle is used, the weaker it gets. Over use just wears out the muscle. Eyes, almost never get rest ...while awake, they are constantly moving, and changing what they are doing, even subtly. While asleep, they move rapidly during REM ... they simply are a hard working muscle group that the immune system has decided to target.
When double vision happens, you put the eye patch on, and you only are looking out of one eye, which means you are only seeing one image. It allows the covered eye to rest, and to not work as hard. It is VERY important to not keep the eye patch over just one eye, or to wear them all the time or you can actually damage the eye sight. But to give the eyes a break, you can wear one for an hour, then switch it, and the eyes will feel like they've been given a new lease. The facial muslces that help to assist the eyes, stop straining because the eyes don't have to work as hard.
Then because the face is more relaxed, the shoulders and neck tend to not have to work as hard ...and it snow balls into the whole body working more effectively.
It also reminds you to ..um ..er .. take it easy and that you might be a bit beyond your limits if it's too early in the day.
This last friday, I did some deeeeeep cleaning. I got mad at my kids and did 12 loads of THEIR laundry in one day. Then cleaned out my kitchen cabinets, re organizing them. (I get mad, I clean). I also did a few other deep cleaning gems that needed attending to, but could have waited ...or done by teenaged boys.
Then Saturday, I decided that I wanted to try the Butternut squash soup I'd been seeing on Food network ...and I cooked it. It took a good part of the day. I also made a pork shish kabobs. I spent 8 hours total in the kitchen.
I went to pay the Macy's bill ..and found a treat in my car. An abandoned puppy (complete with note! telling me breed and age)!! Which, by the way is Black lab/ Austrailian shephard. She is 8 weeks old. She has stolen our hearts and we've decided to keep her ... so house breaking and playing, and training ensued. Including up in the middle of the night to take her outside. We've named her Hershey.
I thought about making the boys do it, but realized they were leaving for camp on Monday (today) morning ..and figured I might as well do it myself.
Then Sunday, church, where I worked children's ministry and we had a church picnic ... in the sun and heat. Then home to get my kids ready for church camp. Which included a 10 pm run to walmart to get last minute stuff ..and struggling to get them to pack at midnight.
This morning started out at 7 am ... to finish running to get stuff they hadn't remembered they needed and didn't have (bathing suit!) and to get an umbrella because I don't own one ...and well ..housebreaking in the rain.
All that ...and my eyes are in desperate need of those patches!! I asked my son to take a picture of me wearing them. I put on a big smile and then took them to camp. Finally got them opened and was shocked to see ... my smile! Where is it???
MG strikes again!
So, while I look like I'm not smiling ... I am, it's an MG thing. The muscles are worn out.
Here is a picture of me back in February with a friend. I wasn't as tired, and you can see the difference in my smile
June is Myasthenia Gravis Awareness Month. Famous Myasthenics are Aristotle Onasis and Roger Smith (Ann Margaret's husband). There is also a soap opera actress who has it, as well as her character, but I never can remember who. There have been a couple of football coaches with it ..and a couple of years ago, a college football player found out he had it mid season!
So, now that I've posted ...and kids are tucked away in southern oklahoma at camp .. and Hershey is having fun with Don ... I think, I will tuck myself into bed. Thank you, again Ramona!
Tuesday, June 03, 2008
ChronicBabe Goes to Grand Rounds
ChronicBabe is a blogger who blogs about many issues regarding chronic illnesses. I found her initially through Grand Rounds quite a while back. Then we 'befriended' each other on facebook and then on Twitter.
This week, her Grand Rounds entry hit very close to my heart ..even closer than the norm.
When the person who needs the caretaking becomes the caretaker ... I've found myself increasingly in this roll both with my husband and mother.
There is excellent advice in there. I don't always follow it ..some I follow to the letter.
If you are a caretaker this is a must read. If you are a caretaker with a chronic illness ..this is a MUST READ.
If you have a chronic illness ...go take a look around Chronicbabes .. it's a nice time out of the day. Like chocolate on a tough day.
This week, her Grand Rounds entry hit very close to my heart ..even closer than the norm.
When the person who needs the caretaking becomes the caretaker ... I've found myself increasingly in this roll both with my husband and mother.
There is excellent advice in there. I don't always follow it ..some I follow to the letter.
If you are a caretaker this is a must read. If you are a caretaker with a chronic illness ..this is a MUST READ.
If you have a chronic illness ...go take a look around Chronicbabes .. it's a nice time out of the day. Like chocolate on a tough day.
Flocking
This is all Vijay's fault ....
I tried Twittering at his suggestion and I've gotten hooked. Pownce, I think was
Moof's invite ... But Vijay suggested that I try Flock. An innocent suggestion.
So, I go and download it.
What happens? Hook line and sinker ... I'm reeled in like a trout in a feed pond!
It keeps my flickr, my picasa, my youtube, my twitter, my pownce, my blog ... everything at just one place ..it's an internet junkie's crack I tell ya!
the only thing I can't get on it (yet?) is my bloglines and YMX
Go ...look at flock ... it only takes seconds to download (even with my slowest dsl connection!) you'll see! It will keep even the most unorganized person all kept together in a nice little spot!
sigh ... I'm hooked!
I tried Twittering at his suggestion and I've gotten hooked. Pownce, I think was
Moof's invite ... But Vijay suggested that I try Flock. An innocent suggestion.
So, I go and download it.
What happens? Hook line and sinker ... I'm reeled in like a trout in a feed pond!
It keeps my flickr, my picasa, my youtube, my twitter, my pownce, my blog ... everything at just one place ..it's an internet junkie's crack I tell ya!
the only thing I can't get on it (yet?) is my bloglines and YMX
Go ...look at flock ... it only takes seconds to download (even with my slowest dsl connection!) you'll see! It will keep even the most unorganized person all kept together in a nice little spot!
sigh ... I'm hooked!
Monday, June 02, 2008
Twitchy
I have a cat ... he's a beautiful Maine Coon cat ...a bit camera shy, who is determined that we not get a picture of his beautiful tail.
He is also the cat who bit me when I tried to bathe that tail.
The bite itself is the bright red spot, the silver marks is the pen outlining where the infection kept spreading too before it finally started to get better.
Turkey cat.
Anyway ... twitch is all forgiven now.
He is also the cat who bit me when I tried to bathe that tail.
| http://picasaweb.google.com/Peggikaye/OtherStuff/photo#5207155856014117378"> |
| From stuff |
Turkey cat.
Anyway ... twitch is all forgiven now.
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