Community Forum Archive
Introduction To My Story and Life
Tue, 05/05/2020 - 17:05Topic: Share Your Story
I was born 1lb.15 oz. premature at 6 months and at birth I was diagnosed with colpocephaly which is a congenital brain abnormality and malformation,and mild cerebral palsy. I also had to stay in the hospital for two months in order to be fully developed and reach a higher weight to be brought home. On the other hand,I always struggled when it came to keeping up with the other kids and I worked differently and at a slow pace in school, and growing up I always dealt with my learning disability and received help from my teachers. I was also placed in this special program in high school called the Ryken Progam. Furthermore,the teacher in the program helped me with my homework and tests papers that i needed to correct and I passed the program with a C average. However,I have a math disability called dyscalculia and have trouble multi-tasking for example like driving. Anyways,two years ago,however,unfortunately my grandmother passed away from stomach cancer in August of 2007. Then in September of 2007,I was diagnosed with epilepsy at age 22 and I was put on medication called keppra which controls my seizures. Finally,I have been working so hard to obtain employment but its so hard with my disability and some people just don't understand what i have been through and have to go through.
Comments
Hi,Thank you for posting and
Submitted by Anonymous on Wed, 2020-05-06 - 09:48
Hi,Thank you for posting and for sharing your story, it sounds like you’ve been through a lot. It’s important to remember that you are not alone, and we are here to help support you. We understand that living with epilepsy is more than seizures, it also means learning how to handle the way epilepsy affects your life including your physical well-being, social and emotional health. https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health . One of the most important things to help you live with epilepsy is to find a support network. The Epilepsy Foundation has many resources available that can help you find your support network. Contact your local Epilepsy Foundation, here: https://www.epilepsy.com/affiliates , to find support groups, events, and programs in your community. Additionally, you may want to consider participating in treatment, seizure and lifestyle management programs, that can help people with epilepsy learn skills to better manage their epilepsy and its effects on daily life: https://www.epilepsy.com/learn/managing-your-epilepsy/what-managing-epilepsy-well-network . As Gianna mentioned in her comment, you may want to consider seeing a vocational rehabilitation counselor to help you navigate your career and in many communities the local Epilepsy Foundation offers programs and resources to help connect you with vocational counselors. https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/vocational-rehabilitation-counselors. Explore the employment section of our website, to help manage the impact of epilepsy on your work: https://www.epilepsy.com/living-epilepsy/independent-living/employment-help-what-you-need-know .You may also want to consider keeping a journal or a diary to help keep track of your seizures, medications, and more. My Seizure Diary, can be used to organize health issues, other therapies or personal experiences, develop seizure response plans, and more, which can be share with your healthcare team: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary . Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, contactus@efa.org. epilepsy.com/helpline
I have been through a lot. I
Submitted by quida1017 on Thu, 2020-05-07 - 14:46
I have been through a lot. I was suppose to be born in January of 1985. But, was born 3 months earlier on October 17th, 1984. Well, I'm not employed at the moment. It's hard because of my disability. But, I did apply for two jobs on usajobs with my resume and schedule A letter. So, I'm still waiting for them to come through. Thanks for the info!
Your welcome. Wow. Thank you
Submitted by quida1017 on Thu, 2020-05-07 - 20:45
Your welcome. Wow. Thank you for sharing your story with me too. Well, I live in Maryland and am from this state. I tried the state vocational rehabilitation DORS years ago and it really wasn't of much assistance for me. But I did apply for two federal government jobs back in March on usajobs.gov website with my resume and schedule A letter, so I'm still waiting to hear from the recruiting and hiring manager. Well, I posted two poems in the creative corner forum called about epilepsy and the Coronavirus. You can check it out.
Your welcome. Wow. Thank you
Submitted by quida1017 on Thu, 2020-05-07 - 20:49
Your welcome. Wow. Thank you for sharing your story with me too. Well, I live in Maryland and am from this state. I tried the state vocational rehabilitation DORS years ago and it really wasn't of much assistance for me. But I did apply for two federal government jobs back in March on usajobs.gov website with my resume and schedule A letter, so I'm still waiting to hear from the recruiting and hiring manager. Well, I posted two poems in the creative corner forum called about epilepsy and the Coronavirus. You can check it out.
I posted two poems in the
Submitted by quida1017 on Thu, 2020-05-07 - 20:49
I posted two poems in the creating corner forum section about epilepsy and the Coronavirus. You can it out.
I also posted another poem
Submitted by quida1017 on Sat, 2020-05-09 - 14:39
I also posted another poem about epilepsy in the creative corner and aside from that, I posted about sexual abuse too.
I also posted another poem
Submitted by quida1017 on Sat, 2020-05-09 - 14:44
I also posted another poem about epilepsy in the creative corner and aside from that, I posted about sexual abuse too.
I posted another poem about
Submitted by quida1017 on Sat, 2020-05-09 - 14:44
I posted another poem about epilepsy in the creative corner and aside from that, I posted about sexual abuse too.
Welcome and thank you for
Submitted by Patriotrehab on Wed, 2020-05-06 - 01:16
Welcome and thank you for sharing your story! I’m a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. My epilepsy started at the age of 19 as a result of medical negligence while pregnant in the military. I had to have an emergency c-section in order to save my life and my baby’s life because I had severe pre-eclampsia that resulted in eclampsia even though they did the c-section. My son was premature too, but healthy. I ended up having seizures and what’s called posterior reversible encephalopathy syndrome (PRES), went into cardiac arrest and was in a coma for several days. In most cases, people who have PRES recover all their faculties, but I was left with multi focal epilepsy, migraines, and a cognitive impairment (problems with attention, memory, processing speed). So, I tried rehabilitating myself with education and that helped some, but I’ve only been able to do self-employment because I can’t keep up with the demands that employers place on me. I’m currently working with my epileptologist on trying to get better seizure control and we’re trying to find a general neurologist to work in collaboration with him to treat my migraines and do a trial of ADHD medication because some research suggests that may work for me. I already take medication that is normally prescribed for Alzheimer’s patients, but it helps my memory. I don’t know where you live or if you’ve already tried it before, but sometimes state vocational rehabilitation can help you find a good job match and even pay for training for you to be in a field that is consistent with your strengths and interests. Self-employment worked for me, but supported employment may be another option for you to talk to vocational rehabilitation about because of your learning disability with math. I know the accounting of a small business is a lot to keep up with and while I use software to do the work for me and pay an accountant, there’s still some that I have to do on my own. It was great hearing your story and sharing mine with you. If you need help finding vocational rehabilitation in your state or have any questions that I may be able to answer, feel free to ask. Best wishes!