May 22, 2009
17 years ago
Thursday, October 30, 2008
The ability to heal yourself is within yourself....
Hmmmmm?????
This statement has always puzzled me. I mean I know I feel better when I feel good about myself. I feel great when the people that I'm surrounded by are happy go lucky. I don't like this complainer person that I've become lately.....
The last couple of days have been a huge eye opener for me. I had a seizure (maybe not according to my Neurologist), had an emotional breakdown, and had an EEG. Now, with the three comes one good, I got accepted into the clinical study that I wanted to. They are going to fly me to Bethesda, MD twice a year starting in January. They will run all kinds of tests at their cost. I will in turn get to take copies to my NS and he can use those. If they find another study that will benefit me they will give me the opportunity to join. This is going to save us tons of money and give me access to worlds of information that I could only dream about obtaining. These doctors are the best of the best, as my NS put it. He actually trained with the head NS in charge at the NINDS. I'm pretty excited about this.
So, things are starting to look up. My meds are upped. I'm sleeping a little more. My mood is getting better my life is going to turn around. Communication is going to be my goal from hear on out. I will voice myself more to my doctors and to my family. They all deserve to know exactly how I feel when I'm feeling it. There's no reason I need to be going through this alone and there's no reason for me to be strong all the time. I have feelings too and I need to talk about them too.
So, many of you know this is my new normal. I will have my symptoms for the rest of my life. They will not get better only funnier (worse). I need to adapt my life to them.
New symptoms since surgery:
*slurred speech (occasionally)
*extreme fatigue
*blank stares/lost in thought with no thoughts
*short term memory loss
*headaches
*burning sensation across forehead
*loss of balance occasionally
*tired(not the same as the fatigue)
I know there's more but I just can't think of it right now. I have been battling a bit of depression too.
I am giving myself the goal to adapt to my new normal and try to enjoy the comedy in it. It's all I can do. I will continue to wake up every morning and tell myself that I love and respect myself just the way I am. I will start my days with morning hugs and kisses from my boys. I will find beauty in every moment.
This statement has always puzzled me. I mean I know I feel better when I feel good about myself. I feel great when the people that I'm surrounded by are happy go lucky. I don't like this complainer person that I've become lately.....
The last couple of days have been a huge eye opener for me. I had a seizure (maybe not according to my Neurologist), had an emotional breakdown, and had an EEG. Now, with the three comes one good, I got accepted into the clinical study that I wanted to. They are going to fly me to Bethesda, MD twice a year starting in January. They will run all kinds of tests at their cost. I will in turn get to take copies to my NS and he can use those. If they find another study that will benefit me they will give me the opportunity to join. This is going to save us tons of money and give me access to worlds of information that I could only dream about obtaining. These doctors are the best of the best, as my NS put it. He actually trained with the head NS in charge at the NINDS. I'm pretty excited about this.
So, things are starting to look up. My meds are upped. I'm sleeping a little more. My mood is getting better my life is going to turn around. Communication is going to be my goal from hear on out. I will voice myself more to my doctors and to my family. They all deserve to know exactly how I feel when I'm feeling it. There's no reason I need to be going through this alone and there's no reason for me to be strong all the time. I have feelings too and I need to talk about them too.
So, many of you know this is my new normal. I will have my symptoms for the rest of my life. They will not get better only funnier (worse). I need to adapt my life to them.
New symptoms since surgery:
*slurred speech (occasionally)
*extreme fatigue
*blank stares/lost in thought with no thoughts
*short term memory loss
*headaches
*burning sensation across forehead
*loss of balance occasionally
*tired(not the same as the fatigue)
I know there's more but I just can't think of it right now. I have been battling a bit of depression too.
I am giving myself the goal to adapt to my new normal and try to enjoy the comedy in it. It's all I can do. I will continue to wake up every morning and tell myself that I love and respect myself just the way I am. I will start my days with morning hugs and kisses from my boys. I will find beauty in every moment.
Tuesday, October 28, 2008
New information on Seizures....
Author: FT Mangano, AE McBride, and SJ Schneider
Brain tumors are a common cause of epilepsy in adults. More than one-third of the 35,000 patients per year with newly diagnosed brain tumors develop epileptic seizures. If the tumor involves the cerebral hemispheres, seizures occur in at least 50% of cases.17,18
Some predictive factors for seizure occurrence include:81,83
tumor location in the frontal or parietal regions
evidence of cerebral hemispheric dysfunction
incomplete tumor resection
Any brain tumor, benign or malignant, common or uncommon, can cause seizures.19–23 Those more highly associated with the development of epilepsy include:83,88
melanoma
hemorrhagic lesions
multiple metastases
slowly growing primary tumors
tumors near the Rolandic fissure
Patients with low-grade tumors may be more likely to develop epilepsy, possibly because their longer survival allows more time for seizures to develop.81 One retrospective study found a median interval of 8 weeks between diagnosis of a brain tumor and a first seizure.83
The tumors most often presenting with seizures in adults are:24–30
dysembryoplastic neuroepithelial tumors (DNETs) 90-100
ganglioglioma59
glioblastoma multiforme34
low-grade astrocytoma69
meningioma27
metastatic tumors41
oligodendroglioma70-90
Epilepsy in children is associated with brain tumors less often than in adults. Tumors still must be ruled out, however, even if the child has no neurologic deficits.32–34 If a tumor is diagnosed, up to 46% of these patients may have intractable seizures.32,35,36 Most tumors occur in the temporal or frontal lobes. As in adults, epileptogenic brain tumors in children may be benign or malignant. The most common tumors associated with epilepsy in children are:30,36–38
gangliogliomas
low-grade astrocytomas
DNETs
oligodendrogliomas
OK, so you may be asking why did I post this. My doctor thinks I'm nuts. She doesn't think that I had a seizure at all. She just thinks that this is the way my life is going to go. She did order an EEG for tomorrow morning and then I go back to see her again in two weeks. I asked her if this is going to be the norm for me and she said yes, the new normal. I asked her if I'm looking more at Quality vs Quantity now and she also said yes. So, here I am. Now what? I started crying in her office. I told her I want to go back to work but that I'm scared. I'm scared to have a seizure or to slur my words or forget my way. She asked me if I applied for SSDI yet and I told her yes. She said good. One thing that I need to understand is that Neurologists and Neurosurgeons don't really have personalities. They are extremely smart but no real people skills.
I go in for an EEG tomorrow morning to see if I am having any detectable seizures and then back to my Neurologist in two weeks to see the results. I really don't know what I'm hoping for.
Brain tumors are a common cause of epilepsy in adults. More than one-third of the 35,000 patients per year with newly diagnosed brain tumors develop epileptic seizures. If the tumor involves the cerebral hemispheres, seizures occur in at least 50% of cases.17,18
Some predictive factors for seizure occurrence include:81,83
tumor location in the frontal or parietal regions
evidence of cerebral hemispheric dysfunction
incomplete tumor resection
Any brain tumor, benign or malignant, common or uncommon, can cause seizures.19–23 Those more highly associated with the development of epilepsy include:83,88
melanoma
hemorrhagic lesions
multiple metastases
slowly growing primary tumors
tumors near the Rolandic fissure
Patients with low-grade tumors may be more likely to develop epilepsy, possibly because their longer survival allows more time for seizures to develop.81 One retrospective study found a median interval of 8 weeks between diagnosis of a brain tumor and a first seizure.83
The tumors most often presenting with seizures in adults are:24–30
dysembryoplastic neuroepithelial tumors (DNETs) 90-100
ganglioglioma59
glioblastoma multiforme34
low-grade astrocytoma69
meningioma27
metastatic tumors41
oligodendroglioma70-90
Epilepsy in children is associated with brain tumors less often than in adults. Tumors still must be ruled out, however, even if the child has no neurologic deficits.32–34 If a tumor is diagnosed, up to 46% of these patients may have intractable seizures.32,35,36 Most tumors occur in the temporal or frontal lobes. As in adults, epileptogenic brain tumors in children may be benign or malignant. The most common tumors associated with epilepsy in children are:30,36–38
gangliogliomas
low-grade astrocytomas
DNETs
oligodendrogliomas
OK, so you may be asking why did I post this. My doctor thinks I'm nuts. She doesn't think that I had a seizure at all. She just thinks that this is the way my life is going to go. She did order an EEG for tomorrow morning and then I go back to see her again in two weeks. I asked her if this is going to be the norm for me and she said yes, the new normal. I asked her if I'm looking more at Quality vs Quantity now and she also said yes. So, here I am. Now what? I started crying in her office. I told her I want to go back to work but that I'm scared. I'm scared to have a seizure or to slur my words or forget my way. She asked me if I applied for SSDI yet and I told her yes. She said good. One thing that I need to understand is that Neurologists and Neurosurgeons don't really have personalities. They are extremely smart but no real people skills.
I go in for an EEG tomorrow morning to see if I am having any detectable seizures and then back to my Neurologist in two weeks to see the results. I really don't know what I'm hoping for.
Monday, October 27, 2008
Neurofibromatosis Type 2
Wikipedia Definition of NF2:
Neurofibromatosis Type II (or "MISME Syndrome", for "Multiple Inherited Schwannomas, Meningiomas, and Ependymomas") is an inherited disease. The main manifestation of the disease is the development of symmetric, non-malignant brain tumours in the region of the cranial nerve VIII, which is the auditory-vestibular nerve that transmits sensory information from the inner ear to the brain. Most people with this condition also experience problems in their eyes. NF II is caused by mutations of the "Merlin" gene, which, it seems, influences the form and movement of cells. The principal treatments consist of neurosurgical removal of the tumors and surgical treatment of the eye lesions. There is no therapy for the underlying disorder of cell function caused by the genetic mutation.
OK, True definition right there, lets take it a step further. They removed four Meningiomas on August 25 so her is that definition from the same source:
Meningiomas are the most common benign tumors of the brain (95% of benign tumors). However they can also be malignant.[1] They arise from the arachnoidal cap cells of the meninges and represent about 15% of all primary brain tumors. They are more common in females than in males (2:1) and have a peak incidence in the sixth and seventh decades. Most cases are sporadic while some are familial. There has been some evidence that persons who have undergone radiation to the scalp are more at risk for developing meningiomas. The most frequent genetic mutations involved in meningiomas are inactivation mutations in the Neurofibromatosis 2 gene (merlin) on chromosome 22q.
A number of studies have linked the slow growing Meningiomas tumor to exposure to certain weed killers, herbicides and pesticides typically used in farming. Women are at a particularly increased risk if they have been exposed to these chemicals for a number of years whereas men with exposure to these chemicals show no increased risk for brain cancer.[2]
Another type of tumor that I have is a Vestibular Schwannoma. Here is the definition for that from Wikipedia:
A schwannoma is a kind of tumor originating from the Schwann cells. The insulating myelin sheath which covers peripheral nerves is produced by the Schwann cells. Hence, one kind of tumor originating from the Schwann cells is called a schwannoma.
Schwannomas are very homogeneous tumors consisting only of Schwann cells. The tumor cells always stay on the outside of the nerve, but the tumor itself may either push the nerve aside and/or up against a bony structure (thereby possibly causing damage). Schwannomas are relatively slow growing. For reasons not yet understood, schwannomas are mostly benign and less than 1% become malignant (degenerate into cancer). This form of cancer is known as malignant peripheral nerve sheath tumour or malignant Schwannoma or neurofibrosarcoma.
Schwannomas can arise from a genetic disorder called neurofibromatosis.
schwannomas can be removed from the nerve but can also come back.
And then you have the information that I found on the NINDS website that states:
What is Neurofibromatosis?The neurofibromatoses are genetic disorders of the nervous system that primarily affect the development and growth of neural (nerve) cell tissues. These disorders cause tumors to grow on nerves and produce other abnormalities such as skin changes and bone deformities. Although many affected persons inherit the disorder, between 30 and 50 percent of new cases arise spontaneously through mutation (change) in an individual's genes. Once this change has taken place, the mutant gene can be passed on to succeeding generations. Scientists have classified the disorders as neurofibromatosis type 1 (NF1) and neurofibromatosis type 2 (NF2). NF1 is the more common type of the neurofibromatoses. In diagnosing NF1, a physician looks for changes in skin appearance, tumors, or bone abnormalities, and/or a parent, sibling, or child with NF1. Symptoms of NF1, particularly those on the skin, are often evident at birth or during infancy and almost always by the time a child is about 10 years old. NF2 is less common. NF2 is characterized by bilateral (occurring on both sides of the body) tumors on the eighth cranial nerve. The tumors cause pressure damage to neighboring nerves. To determine whether an individual has NF2, a physician looks for bilateral eighth nerve tumors and similar signs and symptoms in a parent, sibling, or child. Affected individuals may notice hearing loss as early as the teen years. Other early symptoms may include tinnitus (ringing noise in the ear) and poor balance. Headache, facial pain, or facial numbness, caused by pressure from the tumors, may also occur.
Is there any treatment?
Treatments for both NF1 and NF2 are presently aimed at controlling symptoms. Surgery can help some NF1 bone malformations and remove painful or disfiguring tumors; however, there is a chance that the tumors may grow back and in greater numbers. In the rare instances when tumors become malignant (3 to 5 percent of all cases), treatment may include surgery, radiation, or chemotherapy. For NF2, improved diagnostic technologies, such as MRI, can reveal tumors as small as a few millimeters in diameter, thus allowing early treatment. Surgery to remove tumors completely is one option but may result in hearing loss. Other options include partial removal of tumors, radiation, and if the tumors are not progressing rapidly, the conservative approach of watchful waiting. Genetic testing is available for families with documented cases of NF1 and NF2. New (spontaneous) mutations cannot be confirmed genetically. Prenatal diagnosis of familial NF1 or NF2 is also possible utilizing amniocentesis or chorionic villus sampling procedures.
What is the prognosis?
In most cases, symptoms of NF1 are mild, and patients live normal and productive lives. In some cases, however, NF1 can be severely debilitating. In some cases of NF2, the damage to nearby vital structures, such as other cranial nerves and the brainstem, can be life-threatening.
This last part is what scares me the most. I guess you can do all the research you want, read all of the books, study, learn and still the outcome is that. So, what do I want?
I want to be a part of a study that is going to take a closer look into this disorder and into my family. I want them to study me and to see if I passed it on. I want to help them find a cure so that no one else has to ever go through this. I want to do my part.
I need to show my boys that I gave enough of a damn to give it my all to help find a cure so they didn't have to go through this. I want to show my family how all it takes is one person to say "Hey, this isn't going to get me down".
The anniversary of my mom passing is coming up. This time of year is pretty difficult on all of us without adding the strain of all of this. The doctors don't tell you anything unless you ask the questions. I want so badly to ask is this going to be my normal? Do you foresee me living a long life?
I am researching right now my options for radiation, more surgery, gamma knife, cyber knife etc.... So many options.
First things first, I need to figure out how to pay for my medical premiums. 1100.00 and then a whopping 230.00 a month from here on. A rip off if you ask me, but I can't live without it.
Neurofibromatosis Type II (or "MISME Syndrome", for "Multiple Inherited Schwannomas, Meningiomas, and Ependymomas") is an inherited disease. The main manifestation of the disease is the development of symmetric, non-malignant brain tumours in the region of the cranial nerve VIII, which is the auditory-vestibular nerve that transmits sensory information from the inner ear to the brain. Most people with this condition also experience problems in their eyes. NF II is caused by mutations of the "Merlin" gene, which, it seems, influences the form and movement of cells. The principal treatments consist of neurosurgical removal of the tumors and surgical treatment of the eye lesions. There is no therapy for the underlying disorder of cell function caused by the genetic mutation.
OK, True definition right there, lets take it a step further. They removed four Meningiomas on August 25 so her is that definition from the same source:
Meningiomas are the most common benign tumors of the brain (95% of benign tumors). However they can also be malignant.[1] They arise from the arachnoidal cap cells of the meninges and represent about 15% of all primary brain tumors. They are more common in females than in males (2:1) and have a peak incidence in the sixth and seventh decades. Most cases are sporadic while some are familial. There has been some evidence that persons who have undergone radiation to the scalp are more at risk for developing meningiomas. The most frequent genetic mutations involved in meningiomas are inactivation mutations in the Neurofibromatosis 2 gene (merlin) on chromosome 22q.
A number of studies have linked the slow growing Meningiomas tumor to exposure to certain weed killers, herbicides and pesticides typically used in farming. Women are at a particularly increased risk if they have been exposed to these chemicals for a number of years whereas men with exposure to these chemicals show no increased risk for brain cancer.[2]
Another type of tumor that I have is a Vestibular Schwannoma. Here is the definition for that from Wikipedia:
A schwannoma is a kind of tumor originating from the Schwann cells. The insulating myelin sheath which covers peripheral nerves is produced by the Schwann cells. Hence, one kind of tumor originating from the Schwann cells is called a schwannoma.
Schwannomas are very homogeneous tumors consisting only of Schwann cells. The tumor cells always stay on the outside of the nerve, but the tumor itself may either push the nerve aside and/or up against a bony structure (thereby possibly causing damage). Schwannomas are relatively slow growing. For reasons not yet understood, schwannomas are mostly benign and less than 1% become malignant (degenerate into cancer). This form of cancer is known as malignant peripheral nerve sheath tumour or malignant Schwannoma or neurofibrosarcoma.
Schwannomas can arise from a genetic disorder called neurofibromatosis.
schwannomas can be removed from the nerve but can also come back.
And then you have the information that I found on the NINDS website that states:
What is Neurofibromatosis?The neurofibromatoses are genetic disorders of the nervous system that primarily affect the development and growth of neural (nerve) cell tissues. These disorders cause tumors to grow on nerves and produce other abnormalities such as skin changes and bone deformities. Although many affected persons inherit the disorder, between 30 and 50 percent of new cases arise spontaneously through mutation (change) in an individual's genes. Once this change has taken place, the mutant gene can be passed on to succeeding generations. Scientists have classified the disorders as neurofibromatosis type 1 (NF1) and neurofibromatosis type 2 (NF2). NF1 is the more common type of the neurofibromatoses. In diagnosing NF1, a physician looks for changes in skin appearance, tumors, or bone abnormalities, and/or a parent, sibling, or child with NF1. Symptoms of NF1, particularly those on the skin, are often evident at birth or during infancy and almost always by the time a child is about 10 years old. NF2 is less common. NF2 is characterized by bilateral (occurring on both sides of the body) tumors on the eighth cranial nerve. The tumors cause pressure damage to neighboring nerves. To determine whether an individual has NF2, a physician looks for bilateral eighth nerve tumors and similar signs and symptoms in a parent, sibling, or child. Affected individuals may notice hearing loss as early as the teen years. Other early symptoms may include tinnitus (ringing noise in the ear) and poor balance. Headache, facial pain, or facial numbness, caused by pressure from the tumors, may also occur.
Is there any treatment?
Treatments for both NF1 and NF2 are presently aimed at controlling symptoms. Surgery can help some NF1 bone malformations and remove painful or disfiguring tumors; however, there is a chance that the tumors may grow back and in greater numbers. In the rare instances when tumors become malignant (3 to 5 percent of all cases), treatment may include surgery, radiation, or chemotherapy. For NF2, improved diagnostic technologies, such as MRI, can reveal tumors as small as a few millimeters in diameter, thus allowing early treatment. Surgery to remove tumors completely is one option but may result in hearing loss. Other options include partial removal of tumors, radiation, and if the tumors are not progressing rapidly, the conservative approach of watchful waiting. Genetic testing is available for families with documented cases of NF1 and NF2. New (spontaneous) mutations cannot be confirmed genetically. Prenatal diagnosis of familial NF1 or NF2 is also possible utilizing amniocentesis or chorionic villus sampling procedures.
What is the prognosis?
In most cases, symptoms of NF1 are mild, and patients live normal and productive lives. In some cases, however, NF1 can be severely debilitating. In some cases of NF2, the damage to nearby vital structures, such as other cranial nerves and the brainstem, can be life-threatening.
This last part is what scares me the most. I guess you can do all the research you want, read all of the books, study, learn and still the outcome is that. So, what do I want?
I want to be a part of a study that is going to take a closer look into this disorder and into my family. I want them to study me and to see if I passed it on. I want to help them find a cure so that no one else has to ever go through this. I want to do my part.
I need to show my boys that I gave enough of a damn to give it my all to help find a cure so they didn't have to go through this. I want to show my family how all it takes is one person to say "Hey, this isn't going to get me down".
The anniversary of my mom passing is coming up. This time of year is pretty difficult on all of us without adding the strain of all of this. The doctors don't tell you anything unless you ask the questions. I want so badly to ask is this going to be my normal? Do you foresee me living a long life?
I am researching right now my options for radiation, more surgery, gamma knife, cyber knife etc.... So many options.
First things first, I need to figure out how to pay for my medical premiums. 1100.00 and then a whopping 230.00 a month from here on. A rip off if you ask me, but I can't live without it.
Sunday, October 26, 2008
I took two steps back this time
A seizure.....Yes you heard me right. You know, it doesn't seem fair that this is happening when all I want to do is get better and get back to work. All that I can think of is how scared I am to do this.
I am scared of having a seizure at work. I'm scared that I won't be able to do it. I am scared that I am not myself. I am striving to be normal and I'm finding that just by doing that it is putting more stress on me.
Now, I do have my normal stresses. Bills, Health, Kids, Family, ME. How about one weekend just for me. One weekend where all we do is have fun and laugh and nothing is said or mentioned about my tumors or my disorder. Not a word about me being sick. Not a word about the bills or money or anything. Just me and some close friends and a couple of bottles of wine. We could play cards and have fun. I really don't think this is too much to ask for.
I'm so tired of crying all the time. I'm so tired of worrying whether this next MRI is going to turn out OK or when they "Up" my meds what are the reactions going to be. I'm so tired of living my life around this. I want to start to enjoy myself. I want to smile again.
I don't want to be blamed for our situation anymore and I don't want to blame myself.
As you can see I have taken two steps back. I wasn't anticipating a seizure. I actually felt so good that entire day. I went to visit some old co-workers and came home and cleaned the house. Maybe I just over did it but I felt good. I got all of my medical bills in order and even called them to set up payment arrangements. Then the kids came home from school and Boom!!!! I couldn't talk, I couldn't keep my eyes open. I sat down and slept for about 30 minutes and I felt better. My youngest said I was talking funny.
That night I woke up and I had bit my cheek and tongue.
Today my head hurts again. I'm so tired of this. I'm also tired of being so negative so that needs to change. I am trying to remember by starting and ending my day looking in the mirror saying I love myself. I do find that I do this a lot throughout the day.
I am doing good. I will update everyone on my appointment with the Neurologist on Tuesday. She will let me know about my meds and work and such.
"Good Things Come To Those Who Wait" I love that quote......
I am scared of having a seizure at work. I'm scared that I won't be able to do it. I am scared that I am not myself. I am striving to be normal and I'm finding that just by doing that it is putting more stress on me.
Now, I do have my normal stresses. Bills, Health, Kids, Family, ME. How about one weekend just for me. One weekend where all we do is have fun and laugh and nothing is said or mentioned about my tumors or my disorder. Not a word about me being sick. Not a word about the bills or money or anything. Just me and some close friends and a couple of bottles of wine. We could play cards and have fun. I really don't think this is too much to ask for.
I'm so tired of crying all the time. I'm so tired of worrying whether this next MRI is going to turn out OK or when they "Up" my meds what are the reactions going to be. I'm so tired of living my life around this. I want to start to enjoy myself. I want to smile again.
I don't want to be blamed for our situation anymore and I don't want to blame myself.
As you can see I have taken two steps back. I wasn't anticipating a seizure. I actually felt so good that entire day. I went to visit some old co-workers and came home and cleaned the house. Maybe I just over did it but I felt good. I got all of my medical bills in order and even called them to set up payment arrangements. Then the kids came home from school and Boom!!!! I couldn't talk, I couldn't keep my eyes open. I sat down and slept for about 30 minutes and I felt better. My youngest said I was talking funny.
That night I woke up and I had bit my cheek and tongue.
Today my head hurts again. I'm so tired of this. I'm also tired of being so negative so that needs to change. I am trying to remember by starting and ending my day looking in the mirror saying I love myself. I do find that I do this a lot throughout the day.
I am doing good. I will update everyone on my appointment with the Neurologist on Tuesday. She will let me know about my meds and work and such.
"Good Things Come To Those Who Wait" I love that quote......
Tuesday, October 21, 2008
One step forward Three steps back
Did you ever want to just crawl into a hole and disappear? Yesterday was a good day for the most part. I got a lot off my chest and was paying bills and kicking butt and then BOOM!!!! It hits this morning. Bad news.
Now I can take it like any other person but come on....first thing in the morning. I hate that phone call. And to top it off it affects me directly because as a mom we tend to put ourselves last....well guess who's going without their meds. But, at least my boys are fed. I'm ready for a new game plan. A new way for me to tackle this because I can't do it this way anymore.
Why did I have to get this disease. I mean it totally could have been anything else and we could be blaming it on that right now and not on me and my lack of working or lack of contributing or lack of whatever. I'm so sick of it. It's always my fault, or my tumors.
When do we start taking responsibility for our own actions and just say OK it's because of us not because of my sickness or anything else. I didn't cause this by myself, it was a joint effort. All this time I have been so worried about my family and how they would react to my illness I should have just kept it to myself and let it run it's coarse. At least then we couldn't blame it on that.
Blame is wrong in any sense of the meaning. It hurts. I didn't do this intentionally. I hurt everyday because my children have to suffer but they don't know it. I'm home everyday and I spend so much time with them because I want to see everything about them. I want to watch them grow and don't want to miss a thing. They do get sick of me though.
Today I am going to try Yoga. I am going to try to meditate and come up with a solution to my problem.
Have a good day everyone!
Now I can take it like any other person but come on....first thing in the morning. I hate that phone call. And to top it off it affects me directly because as a mom we tend to put ourselves last....well guess who's going without their meds. But, at least my boys are fed. I'm ready for a new game plan. A new way for me to tackle this because I can't do it this way anymore.
Why did I have to get this disease. I mean it totally could have been anything else and we could be blaming it on that right now and not on me and my lack of working or lack of contributing or lack of whatever. I'm so sick of it. It's always my fault, or my tumors.
When do we start taking responsibility for our own actions and just say OK it's because of us not because of my sickness or anything else. I didn't cause this by myself, it was a joint effort. All this time I have been so worried about my family and how they would react to my illness I should have just kept it to myself and let it run it's coarse. At least then we couldn't blame it on that.
Blame is wrong in any sense of the meaning. It hurts. I didn't do this intentionally. I hurt everyday because my children have to suffer but they don't know it. I'm home everyday and I spend so much time with them because I want to see everything about them. I want to watch them grow and don't want to miss a thing. They do get sick of me though.
Today I am going to try Yoga. I am going to try to meditate and come up with a solution to my problem.
Have a good day everyone!
Monday, October 20, 2008
I Need to get Control back quick
I need to regain control of my life. It's my body. I tell it what to do and I tell it whether it can be sick or not. I tell it if it can be tired or if it's going to have a bad day. Mind over matter.
Life is all about choices....or so I thought.....
I did not chose this....I don't want it....Who wants brain tumors? If anyone answered yes I can give you some of mine, I have plenty.
ARRRRGGGGGHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I just want to scream.........
I want to be happy and positive like I was before surgery. I want to have that feeling again like I have control over what is going on with my body. I want to heal and be normal and have a doctor tell me that I am healed....... I want to be the miracle case. I want to be the one who changes the coarse of history so that my children don't have to repeat it. I don't want them to have this or go through it.
Matthew had another headache today. Probably caused by playing too many video games but it scares the crap out of me. I could, potentially, pass this on to my boys. My legacy to them is brain tumors. Oh and lets not forget the added seizures, numbness, paralyses, and possible death. WOW! What a great mom I am. This is truly what is killing me.
I know in my heart that I didn't do this intentionally. I never asked for this, nor would I wish this on my worst enemy. I just can't get it out of my head. Every time I look at my boys I think about it. I wonder if they could have this. If I passed it on to them. I'm really scared.
I'm scared to die before seeing them grow up, before growing old. I look forward to seeing my mom and grandpa in heaven don't get me wrong but I am scared to have someone else raise my boys. I had them, they are my responsibility, they are my life.
I guess that if I want to get the control back then I need to start by putting one foot in front of the other. I need to get out there and start trying to rehabilitate myself so that I can start working again. I need to volunteer and be productive. I need to help find a cure for this disease. I need those doctors to study me so they can find a cure. I want to help so that my boys have a chance, so my nieces and nephew have a chance. So that everyone who is diagnosed with this has a chance, including me.
I may not sound OK but I am. I wake up and take it one day at a time. I thank God for giving me one more day. I look around and I am thankful. I am trying to stay as strong as possible for my family. I think that I need someone to be strong for me sometimes.
Life is all about choices....or so I thought.....
I did not chose this....I don't want it....Who wants brain tumors? If anyone answered yes I can give you some of mine, I have plenty.
ARRRRGGGGGHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I just want to scream.........
I want to be happy and positive like I was before surgery. I want to have that feeling again like I have control over what is going on with my body. I want to heal and be normal and have a doctor tell me that I am healed....... I want to be the miracle case. I want to be the one who changes the coarse of history so that my children don't have to repeat it. I don't want them to have this or go through it.
Matthew had another headache today. Probably caused by playing too many video games but it scares the crap out of me. I could, potentially, pass this on to my boys. My legacy to them is brain tumors. Oh and lets not forget the added seizures, numbness, paralyses, and possible death. WOW! What a great mom I am. This is truly what is killing me.
I know in my heart that I didn't do this intentionally. I never asked for this, nor would I wish this on my worst enemy. I just can't get it out of my head. Every time I look at my boys I think about it. I wonder if they could have this. If I passed it on to them. I'm really scared.
I'm scared to die before seeing them grow up, before growing old. I look forward to seeing my mom and grandpa in heaven don't get me wrong but I am scared to have someone else raise my boys. I had them, they are my responsibility, they are my life.
I guess that if I want to get the control back then I need to start by putting one foot in front of the other. I need to get out there and start trying to rehabilitate myself so that I can start working again. I need to volunteer and be productive. I need to help find a cure for this disease. I need those doctors to study me so they can find a cure. I want to help so that my boys have a chance, so my nieces and nephew have a chance. So that everyone who is diagnosed with this has a chance, including me.
I may not sound OK but I am. I wake up and take it one day at a time. I thank God for giving me one more day. I look around and I am thankful. I am trying to stay as strong as possible for my family. I think that I need someone to be strong for me sometimes.
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