I'm trying to decide ... if I want to keep this blog open and just post to it occassionally ... and start a new one totally completely anonymous (which as a writer, I don't like not being able to keep my name attached to my writings, as soon as I let them public, my anonymous blog becomes public ...) or if I want to restrict access to this to people that I approve.
I will be fairly liberal with who I approve ... the down side ... a restricted blog means no more writing for Grand Rounds ... no more 'meeting' new people through the blogsphere by them stumbling across my blog ... the first name that comes to mind is Cathy, Pat (my big blog sis ) Alyson, Erin ... just to name a few ...
But ... I'm so restricted by what I can say at this juncture in my life because my blog is public.
Even things happening with school I don't feel comfortable with blogging about with knowing that certain family having access (sissy in law, that ain't you)
I'm going to take a week to decide. Either way ... those who wish to know what's happening will probably need to let me know either here in my comments or email me at Pearlsofaneagle@aol.com ..if I go private you'll need an invite.
Still thinking ... I just don't want to loose my blogging interest because my muse feels restricted.
Dr. Suess
"And will you succeed? Yes indeed! Yes indeed! Ninety Eight and Three Quarters guarenteed!"
Showing posts with label contemplation. Show all posts
Showing posts with label contemplation. Show all posts
Thursday, October 09, 2008
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.
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!!!
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