June 9th is coming up, a date I am very, very excited about! June 9th marks Matty Fund's 10th annual 5k Walk/Run for epilepsy. My team is named "Shining a Light" & I am currently working on fundraising!
Ever since my diagnosis, I have found comfort in different organizations that have not only given me endless advice, but have introduced me to numerous fundraisers so I could have a direct impact on the money going into epilepsy research or help benefit the lives of children who have uncontrolled seizures. One of these foundations is The Matty Fund, based out of Rhode Island. This foundation takes pride in educating their community on epilepsy while giving those diagnosed guidance on which way to turn next. They are incredible people & I am so blessed to have created a friendship with the founders, Debbie & Richard Siravo.
One of the most important steps in the emotional process of a diagnosis is finding your support system. Whether we like to admit it or not, we are human and every obstacle life throws at us puts us through an emotional roller coaster. Luckily for me, I have an incredibly understanding group of friends that were by my side every step of the way along with a family that did everything in their power to make me feel at peace with my diagnosis. But most importantly, I just had to send 1 email to organizations and was overwhelmed with responses of the founders willing to help me cope & make me feel at home. I owe so many thanks to The American Epilepsy Outreach Foundation based out of Chicago, and Tracy Leydon, who was always quick to respond to every email & send me the necessary tools to hold my own fundraisers while educating me on theirs. The Matty Fund has been equally as amazing!
The bottom line is, a diagnosis of any kind can be scary and a future that once seemed so clear may now be foggy; but it doesn't have to be! With a support system, you can truly accomplish anything.
I owe so many thank you's to everyone who has been there for me along the way and have supported me through spreading a deeper awareness of epilepsy.
Help me raise even more funds & spread even more awareness by either donating to my team for the 5K run or sharing my blog!
http://www.firstgiving.com/fundraiser/tamarasacharczyk/10thannualmattysiravomemorial5kandmattysmightydash
"Be the change you wish to see in the world." - Ghandi
Tuesday, May 29, 2012
Sunday, May 13, 2012
Different Medications & Testing
Good morning everyone! First and foremost, Happy Mother's Day! I am beyond blessed to have the most wonderful mom in the world who has been my biggest support system while battling epilepsy. She has supported me all of my endeavors to spread epilepsy awareness & has helped me reach so many goals that would have otherwise been unattainable. Love you mom!
Updating all of you from my last post with my 24-hour EEG, I am still waiting for results. I also had an MRI a couple days ago along with a meeting with my neurologist. The purpose of the testing is to try and pin point the exact type of epilepsy I have. Epilepsy is a pretty complex condition with many different types and triggers.
For example, there is Idiopathic (genetic causes) generalized epilepsy. There is often, but not always, a family history of epilepsy. Idiopathic generalized epilepsy tends to appear during childhood or adolescence, although it may not be diagnosed until adulthood. In this type of epilepsy, no nervous system (brain or spinal cord) abnormalities other than the seizures have been identified as of yet. The brain is structurally normal on an MRI scan.
People with idiopathic generalized epilepsy have normal intelligence and the results of the neurological exam and MRI are usually normal. The results of the electroencephalogram (EEG -- a test which measures electrical impulses in the brain) may show epileptic discharges affecting the entire brain.
The types of seizures affecting patients with idiopathic generalized epilepsy can include
-Myoclonic seizures (sudden and very short duration jerking of the extremities)
-Absence seizures (staring spells)
-Generalized tonic-clonic seizures (grand mal seizures)
Idiopathic generalized epilepsy is usually treated with medications. Some forms of this condition that may be outgrown, as is the case with childhood absence epilepsy and a large number of patients with juvenile myoclonic epilepsy.
Originally, my childhood neurologist thought I have juvenile myoclonic epilepsy due to my one grand mal seizure and my common myoclonic seizures. After my sleepy EEG last August, they found different activity causing them to think otherwise and increase my medication due to them being unable to diagnose what exactly was wrong with me.
I have also been on the medication Keppra the past couple of years with no side affects until the recent increase in my dose. (I went from 1,000 MG twice a day to 15,000.) Once I had the increase, I began to experience the symptoms. This includes dizziness, extreme fatigue, nervousness, moodiness, forgetfulness, weakness, anxiety, and depression. After realizing how bad my side affects got, I decided I needed to switch medication in order to be myself again.
A few days ago I began switching from Keppra to Lamictal, another epilepsy medication also used to treat bi-polar disorder. One of the most dangerous side affects of this medication is the development of a deadly rash. Once a rash appears, you must stop taking the medication immediately, seek help if it spreads, and contact your doctor. I developed a rash yesterday and quickly stopped taking the medication last night.
I will be switching medication again within the next couple of days and will keep you updated on what is happening along with my test results!
Remember, it takes one Facebook post of my blog to spread the awareness of epilepsy. Help me continue to Shine a Light on Epilepsy!
Hope everyone enjoys the beautiful weather & has a great Mother's Day!
-Tamara Sacharczyk
Miss Greater Holyoke 2012!
Updating all of you from my last post with my 24-hour EEG, I am still waiting for results. I also had an MRI a couple days ago along with a meeting with my neurologist. The purpose of the testing is to try and pin point the exact type of epilepsy I have. Epilepsy is a pretty complex condition with many different types and triggers.
For example, there is Idiopathic (genetic causes) generalized epilepsy. There is often, but not always, a family history of epilepsy. Idiopathic generalized epilepsy tends to appear during childhood or adolescence, although it may not be diagnosed until adulthood. In this type of epilepsy, no nervous system (brain or spinal cord) abnormalities other than the seizures have been identified as of yet. The brain is structurally normal on an MRI scan.
People with idiopathic generalized epilepsy have normal intelligence and the results of the neurological exam and MRI are usually normal. The results of the electroencephalogram (EEG -- a test which measures electrical impulses in the brain) may show epileptic discharges affecting the entire brain.
The types of seizures affecting patients with idiopathic generalized epilepsy can include
-Myoclonic seizures (sudden and very short duration jerking of the extremities)
-Absence seizures (staring spells)
-Generalized tonic-clonic seizures (grand mal seizures)
Idiopathic generalized epilepsy is usually treated with medications. Some forms of this condition that may be outgrown, as is the case with childhood absence epilepsy and a large number of patients with juvenile myoclonic epilepsy.
Originally, my childhood neurologist thought I have juvenile myoclonic epilepsy due to my one grand mal seizure and my common myoclonic seizures. After my sleepy EEG last August, they found different activity causing them to think otherwise and increase my medication due to them being unable to diagnose what exactly was wrong with me.
I have also been on the medication Keppra the past couple of years with no side affects until the recent increase in my dose. (I went from 1,000 MG twice a day to 15,000.) Once I had the increase, I began to experience the symptoms. This includes dizziness, extreme fatigue, nervousness, moodiness, forgetfulness, weakness, anxiety, and depression. After realizing how bad my side affects got, I decided I needed to switch medication in order to be myself again.
A few days ago I began switching from Keppra to Lamictal, another epilepsy medication also used to treat bi-polar disorder. One of the most dangerous side affects of this medication is the development of a deadly rash. Once a rash appears, you must stop taking the medication immediately, seek help if it spreads, and contact your doctor. I developed a rash yesterday and quickly stopped taking the medication last night.
I will be switching medication again within the next couple of days and will keep you updated on what is happening along with my test results!
Remember, it takes one Facebook post of my blog to spread the awareness of epilepsy. Help me continue to Shine a Light on Epilepsy!
Hope everyone enjoys the beautiful weather & has a great Mother's Day!
-Tamara Sacharczyk
Miss Greater Holyoke 2012!
Monday, May 7, 2012
A 24 Hour EEG
This blogs purpose is to educate the public about epilepsy. Epilepsy is a seizure condition that has been a personal part of my life since age 15. Although it has been a roller coaster of emotions and difficulties, this condition has taught me more about myself and my life than I have ever imagined.
I have met extradorinaiy people and organizations who have given me places to feel comfortable with myself and my condition along the way including The American Epilepsy Outreach Foundation (who also sponsored me in 2010 to pursue my dreams while I competed for Miss Teen United States- World), and The Matty Fund, an organization based out of Rhode Island. These people have dedicated a significant part of their lives to not only bring attention to epilepsy, but to help those who suffer from this condition through support groups, camps, and events.
Here a few basic facts:
-Epilepsy affects over 3 million Americans of all ages
-Believe it or not, in America, epilepsy is as common as breast cancer and has taken as many lives.
-Almost 500 new cases of epilepsy are diagnosed every day in the United States
-Epilepsy affects 50 hundred thousand people world-wide
-1 in 100 people will develop epilepsy, and 1 in 10 will suffer from a seizure at some point in their life
-30% of those diagnosed with epilepsy, are children
-In over 30% of patients, seizures cannot be controlled by medication
-Historically, epilepsy research has been under-funded. Each year NIH spends $30 billion of medical research, but just ½ of 1% is spent on epilepsy.
-The Federal government spends much less on Epilepsy research compared to other diseases, many which affect fewer people.
When I was 15 and diagnosed, I was overwhelmed with fear and anger. Instead of feeling bad for myself and for something I have no control over, I chose to embrace my condition to help other people, people who suffer from epilepsy. By the word "suffer" I speak of the children who do not know what is going on with their bodies and brains, the children who are called weird when they have to take certain precautions at schools and camps, and the people who are not controlled by medication and spend their days unsure of whether they'll make it to bed seizure free.
I have held numerous fundraisers and volunteered at many events to help as much as possible, and recently, I have accomplished the biggest blessing of all, being crowned Miss Greater Holyoke 2012 with the platform of "Shining a Light on Epilepsy." With this title, I will be competing for Miss Massachusetts for the Miss America Organization June 29th and 30th. Although I am incredibly excited to stand on stage and represent a condition that needs representation, I am more excited to continue my fundraising efforts with a crown on my head to prove to anyone suffering from any condition or disorder that following your dreams is still possible, despite any struggles.
Currently, I am in a new learning stage of my epilepsy. A few months ago a new doctor determined I was misdiagnosed and have a different type of epilepsy then originally thought. Therefore, they have increased my medication from 1000 milligrams twice a day to 1500. I am also going through testing again to pint point what exactly is wrong so my doctors can begin controlling it.
Today I am having my 24-hour EEG. This EEG records brain activity for 24 hours on a small tape recorder that is worn around the waist. Electrodes are applied to the scalp as usual, and the patient's head is typically bandaged to protect the electrode connections. The patient is sent home with a diary to record activities and any symptoms during the 24-hour monitoring period.
To end this post, I decided to upload a picture of my test for everyone to see! I will continue updating through my process of my new diagnosis!
Yours always,
Miss Greater Holyoke 2012!
I have met extradorinaiy people and organizations who have given me places to feel comfortable with myself and my condition along the way including The American Epilepsy Outreach Foundation (who also sponsored me in 2010 to pursue my dreams while I competed for Miss Teen United States- World), and The Matty Fund, an organization based out of Rhode Island. These people have dedicated a significant part of their lives to not only bring attention to epilepsy, but to help those who suffer from this condition through support groups, camps, and events.
Here a few basic facts:
-Epilepsy affects over 3 million Americans of all ages
-Believe it or not, in America, epilepsy is as common as breast cancer and has taken as many lives.
-Almost 500 new cases of epilepsy are diagnosed every day in the United States
-Epilepsy affects 50 hundred thousand people world-wide
-1 in 100 people will develop epilepsy, and 1 in 10 will suffer from a seizure at some point in their life
-30% of those diagnosed with epilepsy, are children
-In over 30% of patients, seizures cannot be controlled by medication
-Historically, epilepsy research has been under-funded. Each year NIH spends $30 billion of medical research, but just ½ of 1% is spent on epilepsy.
-The Federal government spends much less on Epilepsy research compared to other diseases, many which affect fewer people.
When I was 15 and diagnosed, I was overwhelmed with fear and anger. Instead of feeling bad for myself and for something I have no control over, I chose to embrace my condition to help other people, people who suffer from epilepsy. By the word "suffer" I speak of the children who do not know what is going on with their bodies and brains, the children who are called weird when they have to take certain precautions at schools and camps, and the people who are not controlled by medication and spend their days unsure of whether they'll make it to bed seizure free.
I have held numerous fundraisers and volunteered at many events to help as much as possible, and recently, I have accomplished the biggest blessing of all, being crowned Miss Greater Holyoke 2012 with the platform of "Shining a Light on Epilepsy." With this title, I will be competing for Miss Massachusetts for the Miss America Organization June 29th and 30th. Although I am incredibly excited to stand on stage and represent a condition that needs representation, I am more excited to continue my fundraising efforts with a crown on my head to prove to anyone suffering from any condition or disorder that following your dreams is still possible, despite any struggles.
Currently, I am in a new learning stage of my epilepsy. A few months ago a new doctor determined I was misdiagnosed and have a different type of epilepsy then originally thought. Therefore, they have increased my medication from 1000 milligrams twice a day to 1500. I am also going through testing again to pint point what exactly is wrong so my doctors can begin controlling it.
Today I am having my 24-hour EEG. This EEG records brain activity for 24 hours on a small tape recorder that is worn around the waist. Electrodes are applied to the scalp as usual, and the patient's head is typically bandaged to protect the electrode connections. The patient is sent home with a diary to record activities and any symptoms during the 24-hour monitoring period.
To end this post, I decided to upload a picture of my test for everyone to see! I will continue updating through my process of my new diagnosis!
Yours always,
Miss Greater Holyoke 2012!
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