After a few days of thinking about it ... and a couple of emails asking me to .. I've decided to post the essay I wrote for my developmental pysch class. The assignment was to write about where I was 10 years ago ..emotionally, physically and socially and how I've changed or not changed. The ironic thing of the choice for the 10 year mark was what a pivotal time that was in the life of my parenting of a special needs child.
His Laughter Taught Me
In August of 1998, my youngest son was six and one half years old, my oldest son was almost nine, my husband was forty two, and I was thirty three. The obstacles facing my family were, in short, overwhelming. I was exhausted and at the end of my rope and feeling like I had no more resources to turn to. What made things seemingly worse was having most of the professionals and the support20systems in my life telling me that I was handling things well and doing everything right.
My youngest son, Benjamin, had been diagnosed with PDD-NOS, a mild form of Autism, Auditory and Visual Processing Disorders, an IQ of 75, OCD and a tic disorder. He also had an immune deficiency so he was frequently ill. He had weekly Occupational Therapy, Speech Therapy, and Physical Therapy at Children's Medical Center (and had been in all three therapies since he was nine months old). He had Pediatric Pulmonologist, Neurologist, Gastroenterologist, Psychologist, and Developmental Pediatrician. All of these were in complete agreement with both medical and developmental diagnosis and treatments.
We had taken him to the school district when he was three years old for Special Education Pre-School and they gave us a hard time. We had to take them to due process to get services. He spent two years in a due process ordered IEP preschool, and one year in due process ordered Head start. We then pulled hi m out in order to place him into kindergarten at The Little Light House, who fully agreed with all of the doctors and therapists that were treating him and his diagnosis'.
We moved him back to public school for a second year of Kindergarten. The school district said that this child of ours had no issues what so ever, that he was fine. He was a delightful child and his only issues were maybe some parenting issues, and that if we controlled his behavior better his "learning problems, (if they exist)" would go away. We tried to fight for an IEP for kindergarten and were not successful. At this point it is the beginning of first grade, August of 1998, and they are, once again, refusing Benjamin appropriate services. The only issue they would admit to him having was 'emotional immaturity' and that was 'not an educational issue'. Therefore, they did not have to serve him.
As his mother, I desperately wanted to believe them. I wanted them to be right, tha t he was simply emotionally immature and my parenting was bad. I wanted it to be that simple! I became angry that they were the ones across the table telling me that my child was delightful, a joy to be around and that there was nothing wrong. I was forced into the unenviable position of having to tell them that my child was not OK. That he had weaknesses, that he had trouble learning, that he had difficulties, and that he was not a perfect child. I felt that it should be the school telling the mother that their child has struggles and it is every mother's right to say "but no, you don't understand, my child is lovely!" They had placed me in the position that no mother belongs in: to recount her child's faults ad nauseum.
Benjamin's diagnosis of PDD-NOS brought with it s ome significant sensory issues, social awkwardness, and an extreme lack of impulse control. The sensory issues and impulse control were the things that had us the most concerned. At one point in time, the child psychologist had his impulse control estimated to be equal to that of about a thirteen month old infant. Imagine a one year old child in a six year old body. It is a lot to keep up with and almost impossible to keep safe. He would see something he wanted or somewhere he wanted to go and take off without a second's notice. We had to be able to read his body language and facial expressions in order to second guess what he was about to do to keep him from injuring himself or endangering another child.
Added to the mix was my own health issues, I had undiagnosed lupus and diagnosed Myasthenia Gravis. Myasthenia Gravis is a neuromuscular disease causing weakness and muscle fatigue of the voluntary muscles. The more the muscles are used, the weaker they get. I sometimes needed help getting dressed, running was impossible, I could not climb a flight of stairs and there were many times I could not properly chew food and would often choke on it. Double vision was common because my eyes were so fatigued. I frequently wore leg braces called AFOs (ankle foot orthotics) to keep my leg muscles strong enough to function. Running after this young, active child was a physical impossibility. Reading his body language was an absolute necessity for prevention.
During the year of 1998, I was hospitalized two times. Once for nine days receiving a treatment called plasmapheresis, and once for 17 days. Both for Myasthenic Crisis. I, myself, in addition to taking Benjamin to his constant doctor appointments and therapy appointments, was constantly going to see my own doctors and in and out of the hospital. Each of those doctors were only there to help the patient in front of them. My doctors there to see me, Benjamin's there to see him. My mental exhaustion built as I couldn't seem to get anyone to understand that all of this was effecting all of my family.
In the meantime, shortly after school started that year, while homeschooling my then almost nine year old son, Samuel, he developed a cough that would not go away. Nothing would help. Xray's taken, and medications tried and one day the pediatrician looked at me, went kind of pale and with a very quiet voice said "Peggikaye, this is Tourette's". The pediatrician and I then realized that the tics and OCD affecting my youngest son had been overlooked in my gifted oldest son.
A month later, my husband, who had polio as a child, was becoming weaker and weaker. Post Polio was a term we were becoming more and more familiar with. His Scoliosis and kyphosis were worsening causing restrictive airway disease, and we learned that eventually the scoliosis will do one of a few things; it will either cause the lungs to fail, cause an organ to rupture, or it will twist the spinal cord. One way or another, the doctors told us, they felt he had less than a year to live.
Again, these doctors were there for my husband, or me, or Benjamin, or Samuel ...but no one seemed to be able to deal with all of us. I felt like I was lost in a never-never land and everything kept getting worse. I felt like I was failing at everything and nothing could ever go right again. My body exhausted, my brain unable to function, and my body totally foreign to the athletic body it had been as a teenager. No one seemed able to help me, and anyone who tried just told me that for what was wrong with us, we were doing absolutely fantastic, and Benjamin was 'delightful'. 0A
One of the most desperate moments I can remember, middle of the winter, and Benjamin was in his bedroom with his brother and suddenly Samuel screams. Benjamin had jumped from the 10 foot window of our mobile home, and was running down the street stark naked. I ran out the door to go after him, it was raining, I'm myasthenic. And I fell, flat on my back. Samuel ran and caught his brother and came back and called 911. Afterwards I was taken to the emergency room to find out I was somewhat OK. My heart was broken and my brain was terrified as I realized I could not protect my child and I had no idea how to teach him the social impropriety that he had just committed! We had an appointment the next week with the child psychologist who did not seem alarmed by what had happened, he was after all, autistic. She discharged us from her care with a happy pa t on our backs, encouraging us as to what great parents we were and telling us that "Benjamin is where we try to get our patients to be in therapy."
Devastated, I went home. I'd just been complemented, but I was terrified. I'd just been told that this child I could not protect, nor teach, was exactly where their children were supposed to be. That answer was not acceptable. We still had no services at school and Benjamin was miserably failing in the first grade with the teacher sure that if he just applied himself he could learn his ABC's that he should have learned in pre school, (but it's not a learning disability!).
We received a letter from the State of Oklahoma. We'd applied for services through wavered services when he was about one or two. He had finally come up in the waiting list and was time to be tested to see if he qualified. This was a relief. He would FINALLY be tested by an independent tester. Someone not involved in the interest of either his educational needs nor his=2 0medical care. We would get a finite answer as to any real problems that he had. I had managed to talk myself into believing the school district. A bad move emotionally, but I did it.
She invited me to watch the testing (not something I would ever recommend) and my heart sank as I watched my son struggle more than I ever even realized he struggled. The results came in and she carefully went over the tests with me. She confirmed, not the school districts ideals, but the medical communities diagnosis. My worst fears and my heart shattered as I heard "Autism", "Tourette's Syndrome", "Obsessive Compulsive Disorder", "Auditory and Visual Processing Disorder", and "IQ 75". She also listed a few other gems that would make life difficult for my precious little boy. For strengths, she said, without hesitation, the same thing everybody else had said about my son: "Delightful".
That Sunday, I was singing in the choir at church and my heart was broken. I left the choir loft and headed to the bathroom. T he children's ministry was in the gym and I heard Benjamin laugh. It was a laughter that went from his toes to God's ears. It caught the attention of every single person in the room, from child to adult and brought a smile to their faces.
Immediately I knew: that laughter was my child. Not the test scores, nor the tics, nor the struggles, nor the diagnosis', nor the fights with the schools, nor even the doctor or therapy appointments. Not IQ or autism or impulse control or anytng else! THAT laughter was saying my child and my entire family was going to be OK.
I went into the church sanctuary and wrote the following poem:
A Mother's Heart
Every mother had Dreams,
Of a Child perfect and whole.
Every mother has Hopes,
For perfection, body and soul.
They told me you’re not perfect,
Sweet loving child of mine.
They told me that your learning,
Is taking too much time.
They tell me that your tests came back,
Showing problems and low scores.
They tell me that you have to struggle,
This hurts me to the core.
Every mother has dreams,
They tell me you don’t fit.
Every mother has hopes,
They say perfection you won’t hit.
But they don’t see what I see,
The smile that lights your face.
But they don’t hear what I hear,
Your laughter reveals God’s grace.
They don’t see what I see,
My child loving and whole.
I have hopes and dreams,
Because my child you are a gift from God
And you have a PERFECT SOUL.
© Peggikaye Eagler
Today, ten years later, in August of 2008 my son Benjamin is 16 and one half years old and through therapies, hard work and persistence - the autism diagnosis was removed, his IQ is testing at 98 and while he still has significant Processing Disorders, Sensory Integration Dysfunction, OCD, Tourette's Syndrome, the school did give him an IEP beginning with the second grade and continues to today. Today, his strengths include, not only being delightful, but Social skills are consistently listed as well as leadership.
My health, while not good is improved. I have had a total of twenty seven hospitalizations and fifteen surgeries; although it has been almost two years since my last hospitalization. The lupus has caused significant arthritis in my hands and my chest. I have=2 0tremors, headaches, and vertigo also because of the lupus. These tremors effect my fine motor skills which effects both my hand writing, and I used to be an interpreter for the deaf, but I no longer have the dexterity to use the sign language necessary to do so.
As I've aged, I've had to give way to using reading glasses to see the print on the page. I still struggle with double vision because of the Myasthenia Gravis, but that is the most frequent and most bothersome symptom. The severity of the weakness of ten years ago, is only there if I get too sick or wear myself out (in other-words, it's usually self imposed!).
My husband, who we were told just ten years ago that we should not expect him to live through the year, is still here and doing quite well. A year ago, we almost lost him, and it has taken him a year to recover. But, recover he has, and at this time, he is almost as well as he was in 1998. Surprising not only us, but any doctor w ho has ever laid eyes on him.
What has changed most in me, changed the day I heard my son's laughter, it took root and has taken on many forms of new strength and growth as it has branched out. Hope, success, laughter, and the realization that no matter the struggles the Eagler Family always had more laughter than tears, more hope than fear, and more joy than sorrow. That kept me fighting when I had no fight left, and so ten years later I have helped my family get out of dilapidated mobile home into a House from Humanity for Humanity, home-schooled my oldest son for eight of his school years, watch my fifty-two year old husband fight his way back from an ICU bed and out-live the 'year' by more than ten and realized that I loved my life and I don't want to see another mom as desperate as I was ten years ago and enrolled myself at the age of forty three to start a very long journey toward a Ph.D in Psychology to help not only children, but FAMILIES effected by issues such as autism, OCD, Tourette's Syndrome, developmental delays, processing disorders, Downs Syndrome, or whatever chaos life throws at them.
Dr. Suess
"And will you succeed? Yes indeed! Yes indeed! Ninety Eight and Three Quarters guarenteed!"
Sunday, September 21, 2008
Thursday, September 18, 2008
Balance
Today I realized that my body is yelling at me. Rather loudly. The week before school started I came down with a rather nasty cough, fever ...yada yada yada ... it took 2 rounds of antibiotics to get through it. I'm still .. STILL coughing. I can't talk very much without resorting to coughing. I wake up at night ...coughing. It's not waking up doing my normal MG-- choking --on --my--own-- saliva -- choking ...but coughing! Sigh. It's not bad enough to go back to the doctor or another round of antibiotics. It's just a residual cough that sometimes hangs on for too long when a body has a hard time ridding itself of an infection. Since I'm not relapsing, the assumption is that the infection is gone ..and it is the residual cough.
The first week of school, first round of antibiotics, I started to improve, then within 48 hours of being off the antibiotics I was back to sky high fever and cough worse than the first time. THAT ...was a relapse of the infection.
This ... just won't go away ... cough hack cough hack cough hack.
I sound like a lifetime smoker.
Seriously. It is that smoker's hack. But I don't smoke.
The MG is playing tricks on me ...knees buckling while I'm walking, eyes going double about twice as often as they normally would. To be expected with the increase of activities and use of muscle.
The idea when going back to school was that I would make adjustments in home activities ...to allow for increased at school ... only ... I didn't.
So on top of adding hours and stress of school ... I kept up my load at home.
Whoops.
Soooooo as of today, I'm putting in a new plan of action. Some intentional eye rest every day, not on the computer, not watching TV, and not necessarily sleeping, but ...closed eyes. Making sure that I wear my eye patches if I'm studying and my eyes are tired ...taking a proactive role in taking care of my body. I've got a long road to hoe ...and I have put the proper care techniques into the pattern of my DNA NOW. If I wait till I crash and burn, it will be too late.
I do not want to go crash, burn, recover, crash burn recover ... that is my normal cycle. When I don't have school, that might have worked to go to bed for 3 or 4 days ..but I can't afford that anymore.
I'm having some trouble sleeping, but I am trying to make sure I'm resting anyway. That is making a difference.
The biggest issue with school is my struggle with algebra. OH BROTHER OH MY!
If only Mr Biegel were her to help me now! (7th grade math teacher, my favorite all time teacher ... sigh)
This last week has been one of the most stressful weeks of my life. My mom totalled her car on the 10th, my son totalled our car on the 11th. Mom's was her fault. She shouldn't have been driving because of a right leg injury and was driving with her left foot. She pulled into a parking spot at the public library and went to step on the brake and instead stomped on the gas.
She ran over a tree, over a bike rack and into a light pole. Thank God there were NO children nearby!
Samuel's accident wasn't his fault, exactly. He was driving on the expressway, and got cut off by a wreckless driver going 80 mph in the heavy rain (not just heavy rain, heavy wind and rain ala IKE). The truck cut him off and he had the choice of veering off away from traffic or into traffic. When he chose to go away from traffic, he lost control of the car. He hydroplaned, turned a few 360's and hit the retaining wall (solid cement) backwards ... facing traffic coming at him full speed at him on the freeway.
The not his fault exactly .. simply put is .. a more exprienced driver (IE ..Adult) would not have been in that lane .. and one of the things he said, very frustrated, almost in tears of defense was
"but DAD! I wasn't even going 65!"
(driver's ed drilled into the kids ... when it's raining .. don't go 65, as if that's the magic number to keep you from hydroplaning?)
The reality was ... he had no business being in that center lane ... and he certainly had no business being in the center lane NOT going 65 mph ... and if the weather conditions meant he couldn't go 65 ..then DO NOT go into that lane!
Personally, I think a teenaged driver should stay out of that passing lane! They just don't have the experience for it!
Long story short, he didn't have enough driving YEARS to know all of this information ... he does now. I didn't know it at 18 ... I didn't learn that stuff in drivers ed, and no one told me. I learned it through close calls and watching ... I got lucky. My son, did too...just not as lucky as I was.
I'm blessed that all we lost was our car! I get sick when I think about my son plowing into that wall! I want to strangle the man who callously cut off a teenaged driver going 80 mph in the rain ...just what was so important that you had to risk my sons life?
The first week of school, first round of antibiotics, I started to improve, then within 48 hours of being off the antibiotics I was back to sky high fever and cough worse than the first time. THAT ...was a relapse of the infection.
This ... just won't go away ... cough hack cough hack cough hack.
I sound like a lifetime smoker.
Seriously. It is that smoker's hack. But I don't smoke.
The MG is playing tricks on me ...knees buckling while I'm walking, eyes going double about twice as often as they normally would. To be expected with the increase of activities and use of muscle.
The idea when going back to school was that I would make adjustments in home activities ...to allow for increased at school ... only ... I didn't.
So on top of adding hours and stress of school ... I kept up my load at home.
Whoops.
Soooooo as of today, I'm putting in a new plan of action. Some intentional eye rest every day, not on the computer, not watching TV, and not necessarily sleeping, but ...closed eyes. Making sure that I wear my eye patches if I'm studying and my eyes are tired ...taking a proactive role in taking care of my body. I've got a long road to hoe ...and I have put the proper care techniques into the pattern of my DNA NOW. If I wait till I crash and burn, it will be too late.
I do not want to go crash, burn, recover, crash burn recover ... that is my normal cycle. When I don't have school, that might have worked to go to bed for 3 or 4 days ..but I can't afford that anymore.
I'm having some trouble sleeping, but I am trying to make sure I'm resting anyway. That is making a difference.
The biggest issue with school is my struggle with algebra. OH BROTHER OH MY!
If only Mr Biegel were her to help me now! (7th grade math teacher, my favorite all time teacher ... sigh)
This last week has been one of the most stressful weeks of my life. My mom totalled her car on the 10th, my son totalled our car on the 11th. Mom's was her fault. She shouldn't have been driving because of a right leg injury and was driving with her left foot. She pulled into a parking spot at the public library and went to step on the brake and instead stomped on the gas.
She ran over a tree, over a bike rack and into a light pole. Thank God there were NO children nearby!
Samuel's accident wasn't his fault, exactly. He was driving on the expressway, and got cut off by a wreckless driver going 80 mph in the heavy rain (not just heavy rain, heavy wind and rain ala IKE). The truck cut him off and he had the choice of veering off away from traffic or into traffic. When he chose to go away from traffic, he lost control of the car. He hydroplaned, turned a few 360's and hit the retaining wall (solid cement) backwards ... facing traffic coming at him full speed at him on the freeway.
The not his fault exactly .. simply put is .. a more exprienced driver (IE ..Adult) would not have been in that lane .. and one of the things he said, very frustrated, almost in tears of defense was
"but DAD! I wasn't even going 65!"
(driver's ed drilled into the kids ... when it's raining .. don't go 65, as if that's the magic number to keep you from hydroplaning?)
The reality was ... he had no business being in that center lane ... and he certainly had no business being in the center lane NOT going 65 mph ... and if the weather conditions meant he couldn't go 65 ..then DO NOT go into that lane!
Personally, I think a teenaged driver should stay out of that passing lane! They just don't have the experience for it!
Long story short, he didn't have enough driving YEARS to know all of this information ... he does now. I didn't know it at 18 ... I didn't learn that stuff in drivers ed, and no one told me. I learned it through close calls and watching ... I got lucky. My son, did too...just not as lucky as I was.
I'm blessed that all we lost was our car! I get sick when I think about my son plowing into that wall! I want to strangle the man who callously cut off a teenaged driver going 80 mph in the rain ...just what was so important that you had to risk my sons life?
Monday, September 08, 2008
Psychology Student
I was introduced today as a Psychology Major, by a professor.
Suddenly, it's real.
:o)
Still don't have my Humanities test grade back. :o( Not happy about that.
Got my paper with feed back, from psychology class. It made me smile.
Thinking of posting it here, but not wanting to get into the habit of putting my blog readers through the torture of having to read all my writing assignments. ;o) Still debating on this one.
Tomorrow I get (hopefully) the results of algebra test. I am finally starting to breath normally after thursday's panic attack.
Suddenly, it's real.
:o)
Still don't have my Humanities test grade back. :o( Not happy about that.
Got my paper with feed back, from psychology class. It made me smile.
Thinking of posting it here, but not wanting to get into the habit of putting my blog readers through the torture of having to read all my writing assignments. ;o) Still debating on this one.
Tomorrow I get (hopefully) the results of algebra test. I am finally starting to breath normally after thursday's panic attack.
Saturday, September 06, 2008
It's Saturday
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 ... .. ... ...
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 ... .. ... ...
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.
Saturday, May 24, 2008
Back!
Ok, I am back.
My computer is totally fixed.
Blog problems and all.
The ramifications, may be longer standing.
Benjamin had let a neighbor into the house to use a photoshop program we have. In doing so, she also visited a few of the favorites
Using the program, was messing with the virtual memory of the computer. So, we had told the boys we couldn't use it until it got properly installed. She'd come over and use it, the virtual memory would be all screwed up, then my blogs would be inacessible to me ... at times, or only partially accessible at other times.
Quite a frustrating week on the computer.
I have on my computer, as well as had told her about. I don't have them saved in a 'secure' space, we share a home address with the family. She accessed one of the blogs I read, got mad at the post, and trolled it anonymously.
She lamblasted the poor girl to bits. What's worse (and somewhat sick) is she took part of my story, and twisted it beyond measure!
Enough of it was there, that I could recognise it. Some I know she's never been told by me (sons? read my blog? husband?) others I know I've told her. Some is stuff I know has happened to her. It is an angry diatribe at this poor girl who was venting on her blog. I still don't know if it came from my IP address or not, but it did come from my area.
The thing that made me first suspect her was the ' surgery to cut my chest wide open' with no reference as to why. The implication being heart surgery like most would have for a transternal operation. (Without the use of the word transternal) Only, mine, was a thymectomy, my heart is fine. It is quite scary realizing I've got a fruitcake living across the street to me. Again. (just realize I had a weird neighbor before, that was almost this bad.
Guess I need to put those skills into place again. She wormed her way into the house while we were gone as well. )
So, my sincerest apologies to EE at BackboardsandBandaids.Blogspot.com
She is a young EMT with plenty of fire, pregnant, and working. She said this didn't bother her, it was 'blog fodder'. It bothered me greatly.
In part, because I feel like I have been violated. It did take me most of the night to realize that was part of the equation. But also, because I don't just read her blog, I talk to her on IM and I play scrabulous with her on facebook. She's not 'just another blogger' to me. I admire what this young girl has done with her life.
For someone to have taken, what is supposed to be 'me' and do what is so out of character for me (as all my blog friends, as well as personal friends could attest to) feels so, what is the word? Foreign? Violated?
I don't have any recourse because my son let her in to use my computer. I did not have access to the pages private (besides, I'd given her a list of my favorite medical blogs! She supposedly has an interest in 'doing something medical' when she gets on her feet.)
EE did a great job of standing up for herself. Her blog friends did a wonderful job of defending her. I admire her greatly for the minute she saw me on IM asking me. (without, mind you, accusing!) We got to the bottom of it rather quickly.
I am left reeling, with flashbacks of the "Tomato" fiasco of a couple years back. If you weren't a part of that, please, just let that one go. If you know, then you'll understand.
Edit: I have a protected, prepaid credit card on Paypal that is used for children's ministry. I decided to check that. It, also is on the favorites page that my blogs are kept on. Sure enough, purchases that I did not make have been made. Walmart. Clothing for a boy and a girl. In young children's sizes. About the sizes her kids would wear. Less than $25 taken off. (which, there is only $50 on the card, to get more than $25, needs the children's pastor's ID as well because it's the church's money). Now I guess I have a real decision to make. This goes beyond a stealing of a reputation.
My computer is totally fixed.
Blog problems and all.
The ramifications, may be longer standing.
Benjamin had let a neighbor into the house to use a photoshop program we have. In doing so, she also visited a few of the favorites
Using the program, was messing with the virtual memory of the computer. So, we had told the boys we couldn't use it until it got properly installed. She'd come over and use it, the virtual memory would be all screwed up, then my blogs would be inacessible to me ... at times, or only partially accessible at other times.
Quite a frustrating week on the computer.
I have on my computer, as well as had told her about. I don't have them saved in a 'secure' space, we share a home address with the family. She accessed one of the blogs I read, got mad at the post, and trolled it anonymously.
She lamblasted the poor girl to bits. What's worse (and somewhat sick) is she took part of my story, and twisted it beyond measure!
Enough of it was there, that I could recognise it. Some I know she's never been told by me (sons? read my blog? husband?) others I know I've told her. Some is stuff I know has happened to her. It is an angry diatribe at this poor girl who was venting on her blog. I still don't know if it came from my IP address or not, but it did come from my area.
The thing that made me first suspect her was the ' surgery to cut my chest wide open' with no reference as to why. The implication being heart surgery like most would have for a transternal operation. (Without the use of the word transternal) Only, mine, was a thymectomy, my heart is fine. It is quite scary realizing I've got a fruitcake living across the street to me. Again. (just realize I had a weird neighbor before, that was almost this bad.
Guess I need to put those skills into place again. She wormed her way into the house while we were gone as well. )
So, my sincerest apologies to EE at BackboardsandBandaids.Blogspot.com
She is a young EMT with plenty of fire, pregnant, and working. She said this didn't bother her, it was 'blog fodder'. It bothered me greatly.
In part, because I feel like I have been violated. It did take me most of the night to realize that was part of the equation. But also, because I don't just read her blog, I talk to her on IM and I play scrabulous with her on facebook. She's not 'just another blogger' to me. I admire what this young girl has done with her life.
For someone to have taken, what is supposed to be 'me' and do what is so out of character for me (as all my blog friends, as well as personal friends could attest to) feels so, what is the word? Foreign? Violated?
I don't have any recourse because my son let her in to use my computer. I did not have access to the pages private (besides, I'd given her a list of my favorite medical blogs! She supposedly has an interest in 'doing something medical' when she gets on her feet.)
EE did a great job of standing up for herself. Her blog friends did a wonderful job of defending her. I admire her greatly for the minute she saw me on IM asking me. (without, mind you, accusing!) We got to the bottom of it rather quickly.
I am left reeling, with flashbacks of the "Tomato" fiasco of a couple years back. If you weren't a part of that, please, just let that one go. If you know, then you'll understand.
Edit: I have a protected, prepaid credit card on Paypal that is used for children's ministry. I decided to check that. It, also is on the favorites page that my blogs are kept on. Sure enough, purchases that I did not make have been made. Walmart. Clothing for a boy and a girl. In young children's sizes. About the sizes her kids would wear. Less than $25 taken off. (which, there is only $50 on the card, to get more than $25, needs the children's pastor's ID as well because it's the church's money). Now I guess I have a real decision to make. This goes beyond a stealing of a reputation.
ஹாய் Vijay
இ அல்வய்ஸ் வாண்டேது டு சதி இன் தி உநிடேது ச்டடேஸ். உண்டில் ஏ பெவ் எஅர்ஸ் அகோ வென் மி பச்டோர் விசிடேது இந்தியா. வென் ஹி திட், இ பெகமே பாசினடேது வித் தி குன்றி அபிடேர் இ இண்டேர்விஎவேது ஹிம் போர் ஒஉர் தேநோமினடிஒன்ஸ் நேஷனல் மகஜினே.
நொவ், இ ரேஅல்லி வான்ட் டு விசிட் இந்தியா, ஈஸ்பெசியால்லி டு விசிட் விஜய் அண்ட் ஹிஸ் பாமிலி. தி எலேப்தன்த்ஸ் வௌல்ட்ன்'த ஹுர்ட்!
நொவ், இ ரேஅல்லி வான்ட் டு விசிட் இந்தியா, ஈஸ்பெசியால்லி டு விசிட் விஜய் அண்ட் ஹிஸ் பாமிலி. தி எலேப்தன்த்ஸ் வௌல்ட்ன்'த ஹுர்ட்!
Tuesday, May 20, 2008
Under Construction
I'm trying to re arrange my blog. Got rid of a couple of things ... and moving others. The count down clock has been removed from the HTML code, but hasn't quite disappeared from the scene yet.
I tried to move it to the bottom, but it wouldn't move, so I tried to remove it. It won't go. I guess it likes my blog.
So, please excuse me and bear with me as things change around a bit. Hopefully it will lead to a little less cluttered feel.
I tried to move it to the bottom, but it wouldn't move, so I tried to remove it. It won't go. I guess it likes my blog.
So, please excuse me and bear with me as things change around a bit. Hopefully it will lead to a little less cluttered feel.
Monday, May 19, 2008
Frustration Station
This year I have been started on several new medications. (As if I wasn't on enough before). They did not replace old medications, they were added to my regimine.
A few years ago, I was sent to a rheumatologist by my PCP with her hoping to get me started on Plaquenil for the lupus. She felt that the drug required more expertise to manage with my complicated medical history than she wanted to manage.
I went to rheumy ... he felt the drug was too risky ... put me on steroids and steroid creams. (Plaquenil is commonly first line drug for Lupus ...add Myasthenia Gravis into the mix, and you've got a different colored horse)
My PCP was frustrated, but she went along with him. I ...the ever faithful patient, listened to the docs and went along.
Fast forward ...rheumy leaves town ... I'm left with no rheumy ..my Dermatologist ALSO leaves town to go teach in Texas ...and I go to a new dermatologist. (after almost 3 years. Not wise, I know, lupus, history of skin cancer. But my former Dermy had been my dermy since SAMUEL was 6 months old. He was 15 when Dermy moved to Texas. I pouted and didn't want to find a new one)
New dermy is not only good with skin cancer, but QUITE experienced with autoimmune diseases that effect the skin. I'm in there with a red butterflied face (which was only kind of pink and only sometimes there when Rheumy was here, thus the willingness to use steroid creams).
New Dermy doesn't like the high steroids and the constant steroid cream to the face. Hind sight, I realize that my skin issues had significantly worsened over time. Rheumy may not have intended for that much steroid cream to be used either. Ooops.
So, anyway ...she starts me on Plaquenil. I'm fine with that. I know that my PCP had wanted that several years ago anyway. Besides, it may lessen the amount of steroid dose packs etc ...
So here I am ... less than 2 months on it and my eyes are driving me nuts. Blurry vision, double vision, tired (eyes) all the time ... my eye glasses have gone from a 1.00 to a 2.00 (drug store version) just to be able to read. I've gone from using the glasses at night when I'm tired, to not being able to read anything without them.
It's a side effect of ... Plaquenil AND Requip (which I started in January at 2 mg)
BUT ... it is also a MAJOR symptom (a primary symptom) of Myasthenia Gravis.
The reading glasses ... I'm 43. At some point, I was going to need reading glasses ... it happens to the best of us. It evidently is a fact of life.
I've also been started on metformin ... the eyes could be an issue related to metformin ... or any of the issues related to why I need metformin.
Oh yeah, my crestor went from 5 mg to 20 mg since November. I have no idea if the eyes can be effected by Crestor or not.
I'm thinking my stomach issues are probably more in reaction to the significant changes in my drug regimine than an ulcer or endometriosis ... as I've thought about it ... Adding all those meds and changing doses in such a short time ...whose stomach would WANT to handle it?
Metformin and Requip are both very hard on tummy.
At some point ...someone has to cry UNCLE and say enough. I think, my body is doing just that. It may be sick and have it's issues, but there are only so many chemical fixes that can be done without causing more issues!
A few years ago, I was sent to a rheumatologist by my PCP with her hoping to get me started on Plaquenil for the lupus. She felt that the drug required more expertise to manage with my complicated medical history than she wanted to manage.
I went to rheumy ... he felt the drug was too risky ... put me on steroids and steroid creams. (Plaquenil is commonly first line drug for Lupus ...add Myasthenia Gravis into the mix, and you've got a different colored horse)
My PCP was frustrated, but she went along with him. I ...the ever faithful patient, listened to the docs and went along.
Fast forward ...rheumy leaves town ... I'm left with no rheumy ..my Dermatologist ALSO leaves town to go teach in Texas ...and I go to a new dermatologist. (after almost 3 years. Not wise, I know, lupus, history of skin cancer. But my former Dermy had been my dermy since SAMUEL was 6 months old. He was 15 when Dermy moved to Texas. I pouted and didn't want to find a new one)
New dermy is not only good with skin cancer, but QUITE experienced with autoimmune diseases that effect the skin. I'm in there with a red butterflied face (which was only kind of pink and only sometimes there when Rheumy was here, thus the willingness to use steroid creams).
New Dermy doesn't like the high steroids and the constant steroid cream to the face. Hind sight, I realize that my skin issues had significantly worsened over time. Rheumy may not have intended for that much steroid cream to be used either. Ooops.
So, anyway ...she starts me on Plaquenil. I'm fine with that. I know that my PCP had wanted that several years ago anyway. Besides, it may lessen the amount of steroid dose packs etc ...
So here I am ... less than 2 months on it and my eyes are driving me nuts. Blurry vision, double vision, tired (eyes) all the time ... my eye glasses have gone from a 1.00 to a 2.00 (drug store version) just to be able to read. I've gone from using the glasses at night when I'm tired, to not being able to read anything without them.
It's a side effect of ... Plaquenil AND Requip (which I started in January at 2 mg)
BUT ... it is also a MAJOR symptom (a primary symptom) of Myasthenia Gravis.
The reading glasses ... I'm 43. At some point, I was going to need reading glasses ... it happens to the best of us. It evidently is a fact of life.
I've also been started on metformin ... the eyes could be an issue related to metformin ... or any of the issues related to why I need metformin.
Oh yeah, my crestor went from 5 mg to 20 mg since November. I have no idea if the eyes can be effected by Crestor or not.
I'm thinking my stomach issues are probably more in reaction to the significant changes in my drug regimine than an ulcer or endometriosis ... as I've thought about it ... Adding all those meds and changing doses in such a short time ...whose stomach would WANT to handle it?
Metformin and Requip are both very hard on tummy.
At some point ...someone has to cry UNCLE and say enough. I think, my body is doing just that. It may be sick and have it's issues, but there are only so many chemical fixes that can be done without causing more issues!
Sunday, May 18, 2008
oops
I've been told I need to check in. Sorry!!!
I've seriously planned on blogging. Really ... I need to. My son graduated from high school. That is worthy of a blog post. It begs of a blog post.
I freak out everytime I go to blog about it!!
Between that ..and the fact that it's been 25 years since I graduated ... I'm feeling just a bit ... um er ..uh ..er ...middle aged!! Ok, so I am, but that *IS* beside the point.
I have an email list of friends that I've had since I joined the WWW in 1998. It is nicknamed TSBS (tourette's syndrome and yes, the BS is exactly that) It is a small group and we are very tight nit. When our children were little, we clung to each other like a spider web. We were each other's life line, sanity, and survival ... we've seen each other through marriage, divorce, affairs, illnesses, deaths of parents, the near deaths of a spouse (mine) and serious illnesses of parents and spouses. We have held each other's hands through IEP's, fights with neighbors, bosses, job losses and life changes ... through it all ... we've been there. For several years, we did a christmas ornament exchange, those, are treasures beyond belief!
We, for several years, just the 15 of us, kept a volume of emails in our group of about 250 emails a day.
As our children have grown and life has settled for most of us (2 of the children still have SIGNIFICANT Tourette's, the rest, as the medical community promised, have either outgrown it, or symptoms significantly subsided) we still keep in touch. There are about 8 of our core group left ... and our volume of mail have dropped to about 25 emails a month. Between all 8 of us.
However ...nothing in life seems *real* until I have told them. And or blogged about it.
So ...since I have not told TSBS about Samuel's graduation ...and I have not blogged about it ... it's not real ... right?
*grin*
I've seriously planned on blogging. Really ... I need to. My son graduated from high school. That is worthy of a blog post. It begs of a blog post.
I freak out everytime I go to blog about it!!
Between that ..and the fact that it's been 25 years since I graduated ... I'm feeling just a bit ... um er ..uh ..er ...middle aged!! Ok, so I am, but that *IS* beside the point.
I have an email list of friends that I've had since I joined the WWW in 1998. It is nicknamed TSBS (tourette's syndrome and yes, the BS is exactly that) It is a small group and we are very tight nit. When our children were little, we clung to each other like a spider web. We were each other's life line, sanity, and survival ... we've seen each other through marriage, divorce, affairs, illnesses, deaths of parents, the near deaths of a spouse (mine) and serious illnesses of parents and spouses. We have held each other's hands through IEP's, fights with neighbors, bosses, job losses and life changes ... through it all ... we've been there. For several years, we did a christmas ornament exchange, those, are treasures beyond belief!
We, for several years, just the 15 of us, kept a volume of emails in our group of about 250 emails a day.
As our children have grown and life has settled for most of us (2 of the children still have SIGNIFICANT Tourette's, the rest, as the medical community promised, have either outgrown it, or symptoms significantly subsided) we still keep in touch. There are about 8 of our core group left ... and our volume of mail have dropped to about 25 emails a month. Between all 8 of us.
However ...nothing in life seems *real* until I have told them. And or blogged about it.
So ...since I have not told TSBS about Samuel's graduation ...and I have not blogged about it ... it's not real ... right?
*grin*
Thursday, May 08, 2008
Query Opinions ... weighy issues.. ..confusion
I was scanning my email box and weeding out the spam ... I do that a few times a day. I almost deleted the email without reading it.
I didn't recognise the return address.
The subject line didn't catch my attention.
I just about hit the delete ..but something made me decide to look at it.
A stranger. No one in particular. Approaching me, because they'd been given my email address, but they didn't say who gave it to them. They wanted my opinion, advice even ... and I'm sitting here wondering what to tell them.
A few years ago ...I was rather firm on my response.
They were diagnosed with Myasthenia Gravis .... and they want to know if they should have a thymectomy.
What bothers me ...is they didn't say in their email if their doctor's are recommending it. They haven't said if the CT scan or MRI has said it's enlarged or if there is a thymoma (if thymoma is there, the it is a given, get the sucker out).
The enlargement may not even be obvious until it's out ...and even if it is enlarged, does that really *MEAN* anything?
They didn't say if they found me through the blog ...through the MG foundation ...our local MG chapter, my doctor (who has my permission to refer patients who are worried)
They just want to know ... I have Myasthenia Gravis and should I have my thymus gland removed ...and what technique should I 'insist' the doctor's use?
Well, first, it sounds to me like they've already decided to have it, they just don't know if they want transternal (the method I had) or cervical.
I've also read of a new method, that I wouldn't dare blog about because I only read about it once ... something about going in the side of the ribs. It sounded like a dream to me. Oh if only that had been an option for me 16 years ago!
WOW!! I just realized, June 2 will be 16 years since my Thymectomy. Medical science has changed dramatically since then. I went into the hospital with them telling me I had a 60% chance of remission ... by the time I came out of the hospital 10 days later, the study that was expected was released ... 60% was still on the page ... 60% of patients who have a thymectomy with in the first year of onset in the disease can expect to see 'some improvement in symptoms' ... a far cry from 60% chance of remission.
Those who'd been sick for over 2 years at the time of diagnosis (like me) really didn't have much expectation for help. In other words, had the study been released just 3 weeks earlier ... the surgery would not have been recommended for me.
My thymus was enlarged ... significantly so. What that meant for me, I never have learned. I figured, it was just as well that I got it out anyway.
I then, spent the next 10 to 13 years saying that I would do WHATEVER it took to put me into remission ... EVEN IF IT FAILED.
I would recommend the thymectomy ...and DID to many who asked my opinion when their doctor's flat out insisted and they were terrified.
I would tell them that all I could think about was the 'what if it was the one thing I could have done, and didn't do .... it was worth it'
But now ... 16 years later ... research isn't holding fast the recommendation. There really needs to be hard fast proof for a call for that thymectomy. That "what if I'm the small % that gets lucky" isn't quite enough for such a drastic surgery (especially a transternal surgery! They cut your chest wide open for crying out loud!!)
Am I just getting older and understanding risks more?
Am I just getting more pain and because of the surgery ... I've got a significant case of chostochondritis ... where the wires are, and the scar tissue ... it HURTS when the rain comes. When the lupus flares ... the chest wall is a significant sourse of pain for me. Breathing often causes pain when breathing should come as natural as ...well ... breathing!
Is my questioning the 'go for it just in case!' ability to fight this monster (MG) because I've realized that the thymus gland isn't part of the MG monster ... or is it that the risk comes with a monster of it's own down the road?
What do I tell this person who wants my opinion with not enough info for me to form an opinion!
If it were me ...today ... and I didn't know what I know now ..what would I do (assuming I still had my thymus and they wanted to take it)
I also ... was told, and I have *NO IDEA IF IT IS TRUE* that those with no thymus ..cannot have bone marrow transplants ... yet ...in recent months and years ... you read the national research ...bone marrow transplants for autoimmune diseases for lupus and myasthenia gravis .... will I be excluded because I had a treatment that didn't work.
If, that is true ..the patient has no enlarged thymus, and no thymoma ... I'm afraid my answer would be a resounding no. If bone marrow transplants are ever in our futre, do not ruin your choices for future treatments that may act as a cure or life saving tactic.
I guess, I should go do some research to back up my contemplation. After my son graduates.
Between now and then ...this is purely from memory and off the top of my head!!!
I didn't recognise the return address.
The subject line didn't catch my attention.
I just about hit the delete ..but something made me decide to look at it.
A stranger. No one in particular. Approaching me, because they'd been given my email address, but they didn't say who gave it to them. They wanted my opinion, advice even ... and I'm sitting here wondering what to tell them.
A few years ago ...I was rather firm on my response.
They were diagnosed with Myasthenia Gravis .... and they want to know if they should have a thymectomy.
What bothers me ...is they didn't say in their email if their doctor's are recommending it. They haven't said if the CT scan or MRI has said it's enlarged or if there is a thymoma (if thymoma is there, the it is a given, get the sucker out).
The enlargement may not even be obvious until it's out ...and even if it is enlarged, does that really *MEAN* anything?
They didn't say if they found me through the blog ...through the MG foundation ...our local MG chapter, my doctor (who has my permission to refer patients who are worried)
They just want to know ... I have Myasthenia Gravis and should I have my thymus gland removed ...and what technique should I 'insist' the doctor's use?
Well, first, it sounds to me like they've already decided to have it, they just don't know if they want transternal (the method I had) or cervical.
I've also read of a new method, that I wouldn't dare blog about because I only read about it once ... something about going in the side of the ribs. It sounded like a dream to me. Oh if only that had been an option for me 16 years ago!
WOW!! I just realized, June 2 will be 16 years since my Thymectomy. Medical science has changed dramatically since then. I went into the hospital with them telling me I had a 60% chance of remission ... by the time I came out of the hospital 10 days later, the study that was expected was released ... 60% was still on the page ... 60% of patients who have a thymectomy with in the first year of onset in the disease can expect to see 'some improvement in symptoms' ... a far cry from 60% chance of remission.
Those who'd been sick for over 2 years at the time of diagnosis (like me) really didn't have much expectation for help. In other words, had the study been released just 3 weeks earlier ... the surgery would not have been recommended for me.
My thymus was enlarged ... significantly so. What that meant for me, I never have learned. I figured, it was just as well that I got it out anyway.
I then, spent the next 10 to 13 years saying that I would do WHATEVER it took to put me into remission ... EVEN IF IT FAILED.
I would recommend the thymectomy ...and DID to many who asked my opinion when their doctor's flat out insisted and they were terrified.
I would tell them that all I could think about was the 'what if it was the one thing I could have done, and didn't do .... it was worth it'
But now ... 16 years later ... research isn't holding fast the recommendation. There really needs to be hard fast proof for a call for that thymectomy. That "what if I'm the small % that gets lucky" isn't quite enough for such a drastic surgery (especially a transternal surgery! They cut your chest wide open for crying out loud!!)
Am I just getting older and understanding risks more?
Am I just getting more pain and because of the surgery ... I've got a significant case of chostochondritis ... where the wires are, and the scar tissue ... it HURTS when the rain comes. When the lupus flares ... the chest wall is a significant sourse of pain for me. Breathing often causes pain when breathing should come as natural as ...well ... breathing!
Is my questioning the 'go for it just in case!' ability to fight this monster (MG) because I've realized that the thymus gland isn't part of the MG monster ... or is it that the risk comes with a monster of it's own down the road?
What do I tell this person who wants my opinion with not enough info for me to form an opinion!
If it were me ...today ... and I didn't know what I know now ..what would I do (assuming I still had my thymus and they wanted to take it)
I also ... was told, and I have *NO IDEA IF IT IS TRUE* that those with no thymus ..cannot have bone marrow transplants ... yet ...in recent months and years ... you read the national research ...bone marrow transplants for autoimmune diseases for lupus and myasthenia gravis .... will I be excluded because I had a treatment that didn't work.
If, that is true ..the patient has no enlarged thymus, and no thymoma ... I'm afraid my answer would be a resounding no. If bone marrow transplants are ever in our futre, do not ruin your choices for future treatments that may act as a cure or life saving tactic.
I guess, I should go do some research to back up my contemplation. After my son graduates.
Between now and then ...this is purely from memory and off the top of my head!!!
Monday, May 05, 2008
I am WOMAN ... Come walk with me!
I posted about this, and will post again ... On May 11 many women across the nation are going to be making steps ... one step at a time ... or many steps together to get themselves healthier ...
In the Woman Challenge to walk virtually across the country to a better health.
http://www.womenshealth.gov/woman/mypage.cfm
It isn't about being skinny, or some crazy weight loss phase ... but about living longer ... having healthier joints ... and about living to see our grandchildren graduate from high school and seeing their children being born and graduate from high school!
This week ... My mother has a birthday ...and my son graduates from high school and I celebrate 25 years from my high school graduation ... but my body is incredibly unhealthy.
I've spent the day feeling like firecrackers have been set off in every joint and every muscle group.
While it has little to do with being out of shape and everything to do with an immune system gone haywire ... . being IN shape is my only real recourse to survive those fireworks.
I do know that I worked out 3 times this last week ...and if I had not ... I'd have been bedridden with those fireworks ... instead of just in pain.
Tomorrows work out, if the fireworks continue, will be limited, but it will take place .... and it will keep the flare that is happening from getting worse than it could. OR at least, that's my theaory.
I have many many blogbuddy's ... and many many real buddy's who read my blog ...
So, I challenge you women ...and you, who love women ... Join with me ... starting MAY 11 ...
Let us Blog Buddies ... make a group to Virtually track across the country ... and Bust those bodies that often fail us ... if you have a healthy body ... keep it that way and make it even healthier ...
If it's not healthy and like mine ... it's fighting lupus, myasthenia gravis ... or you have to fight some other chronic monster like Multiple Sclerosis or Rheumatoid Arhtritis, Fibromyalgia, Asthma, Cancer, recovering from Cancer, Elnors-Danlos Syndrome, Multiple Connective Tissue Syndrome, Any number of cancer, Alzheimers ... or you've lost a loved one to any of those diseases ... Join me on May 11 to get fit ...and get healthy ... get up and moving ... Join me ... and register to my Group Blog Buddy Body Busters at
http://www.womenshealth.gov/woman/myTeam.cfm#progress
Here is the route we'll be taking :
http://www.womenshealth.gov/woman/myTeam.cfm
Join in and then email me at Pearlsofaneagle@aol.com and let me know you've joined!! Keep your progress logged in ...and let's keep each other encouraged!!!
Personally, I'm dedicating my trip to my dear friend's dauther who passed away from Brain Cancer ... Kylie Bug, this is for you!
I know you're not supposed to put your number on the web, but ... I'm going to do it anyway ... if you have any questions
My number is 918 833 1552
In the Woman Challenge to walk virtually across the country to a better health.
http://www.womenshealth.gov/woman/mypage.cfm
It isn't about being skinny, or some crazy weight loss phase ... but about living longer ... having healthier joints ... and about living to see our grandchildren graduate from high school and seeing their children being born and graduate from high school!
This week ... My mother has a birthday ...and my son graduates from high school and I celebrate 25 years from my high school graduation ... but my body is incredibly unhealthy.
I've spent the day feeling like firecrackers have been set off in every joint and every muscle group.
While it has little to do with being out of shape and everything to do with an immune system gone haywire ... . being IN shape is my only real recourse to survive those fireworks.
I do know that I worked out 3 times this last week ...and if I had not ... I'd have been bedridden with those fireworks ... instead of just in pain.
Tomorrows work out, if the fireworks continue, will be limited, but it will take place .... and it will keep the flare that is happening from getting worse than it could. OR at least, that's my theaory.
I have many many blogbuddy's ... and many many real buddy's who read my blog ...
So, I challenge you women ...and you, who love women ... Join with me ... starting MAY 11 ...
Let us Blog Buddies ... make a group to Virtually track across the country ... and Bust those bodies that often fail us ... if you have a healthy body ... keep it that way and make it even healthier ...
If it's not healthy and like mine ... it's fighting lupus, myasthenia gravis ... or you have to fight some other chronic monster like Multiple Sclerosis or Rheumatoid Arhtritis, Fibromyalgia, Asthma, Cancer, recovering from Cancer, Elnors-Danlos Syndrome, Multiple Connective Tissue Syndrome, Any number of cancer, Alzheimers ... or you've lost a loved one to any of those diseases ... Join me on May 11 to get fit ...and get healthy ... get up and moving ... Join me ... and register to my Group Blog Buddy Body Busters at
http://www.womenshealth.gov/woman/myTeam.cfm#progress
Here is the route we'll be taking :
http://www.womenshealth.gov/woman/myTeam.cfm
Join in and then email me at Pearlsofaneagle@aol.com and let me know you've joined!! Keep your progress logged in ...and let's keep each other encouraged!!!
Personally, I'm dedicating my trip to my dear friend's dauther who passed away from Brain Cancer ... Kylie Bug, this is for you!
I know you're not supposed to put your number on the web, but ... I'm going to do it anyway ... if you have any questions
My number is 918 833 1552
Sunday, May 04, 2008
facial recognition
Insomnia setting in here ...
I came across this interesting test ... Being one who has trouble even being able to give a description of my loved ones ... a sister, brother, my own CHILDREN ... I found this test facinating ...
Results
--------------------------------------------------------------------------------
Out of 72 faces, you correctly identified 39.
In other words, you got 54% correct.
--------------------------------------------------------------------------------
On our previous version of this test, the average person with normal face recognition was able to recognize about 80% of the faces. If you correctly identified less than 65% of the faces, this may indicate face recognition difficulties.
For more information about face blindness and other face recognition difficulties, please go to http://www.faceblind.org/.
ok, so they think I might have difficulties ...heh? yeah, I knew that. Always have had. From childhood. I have no clue what causes it.
It will be interesting as I go through school in psychology to see if I can improve on it, or find better ways to cope with it ... I will definitely need to find ways to cope with it. 0.O
Hat tip to Menapausal Moments for the confirmation of my facial recognition issues ;)
At least I know they're real!!
on the famous persons test I got :
Results
Out of 30 faces, you correctly identified 14.You were familiar with 29 of the people in this test.If we exclude the ones you were unfamiliar with, you got 48% correct.
On our previous version of this test, the average person with normal face recognition was able to recognize about 85% of the faces they were familiar with. If you missed more than half of the faces you were familiar with, this may indicate face recognition difficulties. For more information about face blindness and other face recognition difficulties, please go to www.faceblind.org.
I came across this interesting test ... Being one who has trouble even being able to give a description of my loved ones ... a sister, brother, my own CHILDREN ... I found this test facinating ...
Results
--------------------------------------------------------------------------------
Out of 72 faces, you correctly identified 39.
In other words, you got 54% correct.
--------------------------------------------------------------------------------
On our previous version of this test, the average person with normal face recognition was able to recognize about 80% of the faces. If you correctly identified less than 65% of the faces, this may indicate face recognition difficulties.
For more information about face blindness and other face recognition difficulties, please go to http://www.faceblind.org/.
ok, so they think I might have difficulties ...heh? yeah, I knew that. Always have had. From childhood. I have no clue what causes it.
It will be interesting as I go through school in psychology to see if I can improve on it, or find better ways to cope with it ... I will definitely need to find ways to cope with it. 0.O
Hat tip to Menapausal Moments for the confirmation of my facial recognition issues ;)
At least I know they're real!!
on the famous persons test I got :
Results
Out of 30 faces, you correctly identified 14.You were familiar with 29 of the people in this test.If we exclude the ones you were unfamiliar with, you got 48% correct.
On our previous version of this test, the average person with normal face recognition was able to recognize about 85% of the faces they were familiar with. If you missed more than half of the faces you were familiar with, this may indicate face recognition difficulties. For more information about face blindness and other face recognition difficulties, please go to www.faceblind.org.
Thursday, May 01, 2008
:/
I think ... I have an ulcer.
or ... I think it might be endometriosis ...
or worse ...both.
I'm stalling something awful on going and finding out.
I don't want to know for sure.
My ability to be upbeat and be a 'good patient' is wearing very thin.
Very very thin.
or ... I think it might be endometriosis ...
or worse ...both.
I'm stalling something awful on going and finding out.
I don't want to know for sure.
My ability to be upbeat and be a 'good patient' is wearing very thin.
Very very thin.
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