A COLORFUL LIFE WITH EPILEPSY
"I shuddered at thoughts of having to take anti epilepsy drug (AED) to control seizures for a lifetime. The side effects of all these chemically produced drugs with some toxic levels would destroy my health into crumbles beyond repair or even kill me first before seizures could. That being the case, I'd prefer a seizure filled life without AED." These were my thoughts and fears when I was told to take AED for life at an age of 18. Today, 33 years down the road, I am still alive and reasonably healthy after taking AED.
By now, needless to say, any possible side effects of AED could have taken toll on my health. Some friends have been advising me to watch out for my colon, kidneys, heart and liver. With so much toxicity in my body, they said I ought to go for some detoxifying course, engaging in chi exercises, taking more supplements like calcium and multi-vits, etc, etc.
In my opinion, I think it is not only me, a person with epilepsy at my age who has to guard my health in all ways. Taking good care of our health is something everyone should do regardless of age and state of health. And also, whether one has epilepsy or any other illnesses, one must always seek proper treatment and follow doctors' advices.
My advice to newly diagnosed people with epilepsy is never fail to keep up with neuro's appointments and always remember to take AED as prescribed. Adopt positive attitudes and outlooks of life. Live life as normal as you can and challenge yourself to always live life to it's fullest.
My life with epilepsy has been purposeful, meaningful, artful and beautiful. What about yours? Care to share it here with me?
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Posts
Hello. Serene, how are you ? I like the picture in your post. You probably took the photo at a florist.
ReplyDelete1 June 2011 will mark the tenth years of my close association with AED. I would say except for minor inconvenience (packing AED while travelling, daily consume routine etcetc). People with epilepsy can live the life they aspire to.
Hi Jackie,
ReplyDeleteIt's been a long time since I chat with you or hear from you. Thank you very much for your comment. The photo of the flowers were taken during Melbourne's Annual Spring Flower Show 2 years ago. The combination of the varieties of flowers and its' bright distinguished cheerful and brilliant colors are so striking and captivating to the eyes.
I cannot agree more with you that people with epilepsy can live the lives they aspire for. Nothing is impossible with perseverance, grit and determination.
How is your hormone therapy coming along? Hope you are well and healthy.
Thankfully I don't experience any side effects from the hormone therapy. I feel healthy and good. My next appointment with GYN is 21 March. I hope the outcome will be manageable, wish me luck.
ReplyDeleteSerene,
ReplyDeleteAdd your blog to the epilepsy linkup I have going on now at Living Well With Epilepsy, http://livingwellwithepilepsy.com you might get a few new visitors to your site.
Hello Serene! Very long time since I've been able to keep up with everyone else's blogs, but I love this post. Gorgeous picture, caught my eye right away and somewhat soothed me. You always pick the most beautiful/unique pictures for your posts. I hope you are doing well in health and in spirit. Speaking of colon issues, I've found out this week that I probably have Chron's disease, colon polyps, or even colon cancer. Hopefully (ha ha, who would hope for this?) it's only Chron's disease or a polyp. It might have possibly been transferred to me genetically, but many epilepsy meds add to the risk of developing these problems. I'm doing a blog post soon about Chron's Disease and AEDs, once I gather some more information from my doctor. So I agree with you, 100%, that people need to get regular check ups while on AEDs. They are up there with some of the most dangerous medications out there, and they have many side effects that aren't on the side of the bottle.
ReplyDeleteI am so happy to see that another person in this world is rejoicing even through having a disorder like Epilepsy. It's been a long road, but I can finally say that seizures are literally the least of my problems... at least for now. My advice to anyone is to take refuge in the Lord, and rejoice for good health, even though you may not have the best health out there. The way I see it is that someone out there always has it worse than you, so the fact that you are breathing is something to be happy about.
God bless you, and keep up with your blog entries. They are just filled with hope, and you have been a huge inspiration to me. I can't tell you enough how reading your blogs have helped empower me to make it down this long painful road of having Epilepsy. I can now say that I've gone from hundreds of seizures a day to about 10-25, and my VNS has successfully cut that number down. Although I still suffer from time to time, it's people like you that can pull me out of the rut.
- Mandy Krzywonski
Hi Jackie,
ReplyDeleteGreat to know you have been healthy and good. Wishing you all the best in your coming appointment. God bless.
Hi Jessica,
ReplyDeleteHave already linked up my blog.
Hi Amanda,
ReplyDeleteIt's so joyous to hear from you again. We have God in our lives and because we hold Him dearest to our hearts, we are binded and connected strongly by Him to lift and assist each other in all moments of our walk in live. Amen.
Such excellent news to hear of the significant reduction of seizures of yours. We thank God for that and my single seizure so far since last December 2009. Yeah, it is so true that we should always be content and happy with life despite whatever odds life throw on us. No one is spared of sufferings. Only difference is the degree and types of suffering.
Oh, I wish you do not have Chron's disease and hopefully, it is a wrong diagnosis. I have had "plantar fiasciitis" (heel inflammation) for about 10 months already. The heel pain struck me overnight without any explainable reasons and my foot and ankle doctor derived that the only high probable reason for the inflammation is because there is lack of blood supply in the heel areas of both my feet. So, he suggested that he inject blood plasma (purest form of blood) into my heels to treat the inflammation plus swelling.
OUCH n OUCH !!! The injections were the most painful ones in my lifetime. I was not able to walk for the first 2 days after injections and today being the 5th day, I am finally able to walk more like my normal slow walk. I am praying very hard that I won't have another recurrence of inflammation in the shortest time again and that this is the final healing stage of the inflammation. GOD BLESS AND HELP YOU AND ME ALWAYS.
You too have been doing a great job in your blog. Keep up with the great work. May your blog continue to reach out to as many people as possible, the way that God and you would want it to be.
God bless.
Serene
Thanks for adding your site. You have always been such a huge supporter! Best to you.
ReplyDeleteJessica
I have a daughter that has severe epilepsy. Most of her life she has had several seizures daily. This has left her non verbal and unable to communicate in any way. I like finding these blogs written by adults with epilepsy because it helps me understand in some way what she may be feeling. I do hate the AED's because I often wonder what has done the most damage to her brain, the seizures or the AED's . she sleeps alot which is understandable with all of her seizures. right now she has had times where she has been able to go a whole week with out a seizure, which is better then she has ever been. I'm not sure if it is the seizures or the AEDs that have taken away her personality, she doesn't smile or frown, laugh or cry. we reduced one of her meds recently and lately she will at least give a very small grin. I am so glad to find sites like yours and Jessica Keenan Smith's. another site I found is www.epilepsyconnect.com I love the joy you have found in life despite the trials, thanks for sharing it with others
ReplyDeleteHi riverking,
ReplyDeleteI am sorry to hear of your daughter's condition but I rejoice for her cos she has you, a caring and loving caregiver versus one who is not. I earnestly hope she will be able to grin more, disclosing her inner world to you progressively. So happy my site has provided you some form of happiness, comfort and motivation.
Wishing you and your girl healthy and happy moments always.
Hi, I read your post and encouraged me in different ways. I had a brain surgery a long time ago and until now is when I gave lost muscle on the side that was affected and they say that the scar in my brain causes some impulses in my body. Is something new for me and there are this couple of concerns of trying to life a normal life, getting marring, having kids, even waking up that raise within me. How u overcome those fears? How u do what u like the most without even worrying about what is gonna happen? I would like to hear more in detail what u did. It might help me a lot to develop the necessary faith. Thank you!! JR
ReplyDeleteHi JR,
ReplyDeleteThank your for sharing your story and your worries with me. It is normal to worry about uncertainties but then in order to live a happy normal life, one has to try his hardest to forge ahead into the realms of the unknowns and let nature takes it's course. The consequences may not be as fearful as you think it might be.
None of us can predict the unforeseeable and also no one's life is free of adversities. The key to constructive living is to face up to whatever life has to present to us. Accept all things as it comes and handle it with courage and wisdom.
Also, there is a destiny in all our lives. We cannot avert all that is bad and invite only all that is good. Life comprises of bad and good elements of all kinds. So, my conclusive advice to you is to discard all worries you have and adopt a positive attitude in life : " THERE ARE MANY DOORS AND WINDOWS IN LIFE. WHEN ONE CLOSES ON YOU, OPEN ANOTHER " .
I used to work in an office. Then I got married and settled down with a baby boy. I became a full time housewife and today we are a very happy family. Our son is already 23 years old. I hold a valid driving license and only drive during emergencies. I love sport games like badminton, squash, table tennis and bowling.
I once went for two tandem parachute dive from 12,000 ft above sea level. The feeling was fantastic and thrilling. A few hours after my second parachute jump, I had a seizure in my hotel room. It didn't worry me a bit after I regained consciousness. I was still very happy. On other several occasions, I almost died as a result of seizures. One was when I almost drowned in shallow sea water. Another was when I was about to walk past a busy street packed with vehicles, I fell onto the passenger curb and injured and bruised myself terribly. Passer bys called an ambulance.
Despite my seizures, I am still my happy self. Ever so thankful that my condition cannot be any worse than one who suffers from cerebral palsy, parkinsons, multiple sclerosis, cancer, AIDS, etc. When you think your condition is real bad, think about others. Zillions of them are worse off than you and what more they may not even have basic food and water, not to mention, medical aid.
So, be grateful for what you are and live as happily as you can for each and every day. A healthy mind makes a healthy soul. A healthy soul makes a healthy person. GOD BLESS YOU.
Thank you Serene for sharing you life with me. It is awesome to hear someone elses testimony cause it releases faith in your life. Also it is encouraging and open your eyes!!! It is great that you got married and that your son is 23 years old cause when things happen to you the first thing that happens is question your future and if you will be able to make it far.
ReplyDeleteWow...yes God has spoken purpose and destiny in our lives. Yours most be huge cause of everything that happened!!!. I guess that one of the things that as human we want to do is control our own life but when it is hard to do then we get worried and concerned. I'll keep pushing forward and leave the controlling to God. Thank you for writing back and for this post is a blessing!!!
God Bless you!!
Hi JR,
ReplyDeleteI am glad to know my testimony has been a positive and inspiring one to you. That's the right spirit. Push on with life despite epilepsy. Do not let epilepsy be a daily stumbling block in your life. You can break that "blockage" by knocking it down a bit at a time.
I hope your life will soon be a very happy and meaningful one.