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8-19-2010 frontal temporal lobectomy on 7/28/10 (removed benign tumor for complex partial seizures, panic & anxiety attacks)
Sun, 08/08/2010 - 01:38Please someone help
I am a 28 year old female. I have lived alone since I was 22. I have a great job. I work very hard at it. I always have. I have a strong work ethic. I eat well, maintain a healthy lifestyle, workout regularly, have a lab/chow/pitbull mix and am an extremely healthy active young single happy woman. My doctors feared this tumor was glial and that I would die if it were not removed. Surgery was the only option as it was put by the neurosurgeouns. I am strong, proud, and I faced it head on. I am very attractive; I boldly buzzed my long brown hair and fearlessly sport the wigless "G.I. Jane" look (as insensitives who find this type of cruel humor amusing call it). I am proud of the snakelike reddish weltlike upsidedown question mark scar that runs all the way along the top of my left ear. I've been home from the hospital for just over a week now and am proud to say I do not take any Rx pain meds, just OTC. Despite all of my inner strength, determination, preparadness, spiritual closeness with Jesus Christ and support of those around me, I can't help but feel like an utter failure not being allowed to drive. I am staying at my parents' house. I push myself as much as I can. I cook dinner. I do dishes. I feel exhausted, and I keep moving. But nothing changes the fact that every day when my dad asks me the date, the only response that I can find in my brain day after day after day after day is April 15th. When I close my eyes, I see images. Some make sense. Some are just snapshots. I don't know if I'm losing my mind, if I've lost my mind, if I died during surgery, or what is going on. Physically, I feel I need to exercise. I know I shouldn't; physically it's too soon. I need to talk to someone. Or do I need to keep my mouth shut? My family loves me so much. I would hate to burden them with this. Should I call the doctor? I don't know how to really word my issues even. I am still in a lot of pain. I'm so confused. I feel like a waste of time. I wish I had died on the table. More and more each day. Does anyone understand? Or have any ideas? I've never felt so despondent. I'm such a positive person. I radiate positivity. I've gone somewhere. Where did I go? Can I get me back? Can someone help me?
***9/26/2011*** UPDATE *** Look out world, Ambra is baaaack! Well, not completely, but I can safely say I'm me again and my life is my own :-) I haven't had an epileptic seizure since the surgery (success! Thank you Cleveland Clinic!) I'm back to my bubbly, bouncy determined self again and though there are parts of me that are forever changed, I can safely say it's for the better. My hair has grown back (almost reaches my shoulders - when I can get it straightened, that is :-) and I have a deeper appreciation for life and everything in it. I have psychogenic "stress seizures" from time to time but that goes with the territory of working a fast-paced, high stress job like mine. They're very manageable. I feel I went through this for a reason and strangers are always stopping me and asking me why I'm so happy. The only way I know to respond is by telling them "I've overcome some seemingly impossible circumstances and I am living proof that if God brings you to it, he WILL bring you through it." I've started hospice volunteering and am even working to get my dog certified as a therapy dog (she would make an EXCELLENT one!) God has blessed me in so many ways. I have officially been released of my intractible epilepsy diagnosis meaning it is now well controlled with medication and my neuro feels confident that I will likely be able to wean off my anti-convulsants altogether sometime in the upcoming years. I have my moments from time to time, but the uphill climb is over. I've reached the summit and it's sunny skies from here! Thank you to everyone for all your support and I pray for blessings for everyone on this site who is struggling with their epilepsy and the effects of medication. Please know, not hope, but KNOW, there IS a light at the end of the tunnel!
Re: 8-19-2010 frontal temporal lobectomy...title wouldn't fit)
Submitted by BarbG on Sun, 2010-08-08 - 06:49
Ambrakay,
In some ways I honestly can't relate because I have not had surgery and haven't experienced any of the effects of that that you have. I cannot say, I am going through that and completely understand. I also don't know how long ago your surgery was or whether these side effects are normal or need to be investigated further to find out what needs to be done.
Having said that, I admire the hell out of you. You sound like a strong positive independent person and I can only imagine how scary it is to go through what you are. To work as hard as you are working and having the fear that you may be permanently dependent on others for your needs. I see someone though who has a lot of strength, determination and faith and I can't imagine that won't win in the end, even if you have to go through a lot first. My seizures recurred after 30 years and although I am fortunate at this time to still be able to maintain my job and home, I have temporarily lost my driver's license and need to rely on mom, dad and my sister to get around for groceries etc..(good public transportation allows me to get to work without help). No matter how helpful and willing they are...it still sucks as an adult to be that dependent when you were raised not to be.
As a parent, although I don't know your parents, I imagine that they raised you to be this independent and hard working and probably realize how difficult this must be for you. I am quite sure they want to help you have the life that you want for yourself and you deserve. I seriously doubt they resent helping you and probably admire you like I do. Sorry this is taking so long but I am just searching for the words to encourage you. I feel in my bones that you will come out of this and succeed and prosper...maybe to help others that go through this. Please know I am thinking of you and wishing you the very best! Please don't see yourself as a failure, please don't consider suicide or other self harm. Your family would be devasted and see it as their failure. You are a strong person who is going through an extremely difficult time but you will pull through! Please hang in there and grit your teeth through the dependent stage because I believe it will not be a permanent state for you. Give yourself a break and have as much compassion and love for yourself as you have for others. Keep us informed as to how things are going and know that your E family supports you, cares for you and that there are some others who may have a greater understanding of your situation than I am able to now. Just wanted to express my support and good wishes!
BarbG
Ambrakay,
In some ways I honestly can't relate because I have not had surgery and haven't experienced any of the effects of that that you have. I cannot say, I am going through that and completely understand. I also don't know how long ago your surgery was or whether these side effects are normal or need to be investigated further to find out what needs to be done.
Having said that, I admire the hell out of you. You sound like a strong positive independent person and I can only imagine how scary it is to go through what you are. To work as hard as you are working and having the fear that you may be permanently dependent on others for your needs. I see someone though who has a lot of strength, determination and faith and I can't imagine that won't win in the end, even if you have to go through a lot first. My seizures recurred after 30 years and although I am fortunate at this time to still be able to maintain my job and home, I have temporarily lost my driver's license and need to rely on mom, dad and my sister to get around for groceries etc..(good public transportation allows me to get to work without help). No matter how helpful and willing they are...it still sucks as an adult to be that dependent when you were raised not to be.
As a parent, although I don't know your parents, I imagine that they raised you to be this independent and hard working and probably realize how difficult this must be for you. I am quite sure they want to help you have the life that you want for yourself and you deserve. I seriously doubt they resent helping you and probably admire you like I do. Sorry this is taking so long but I am just searching for the words to encourage you. I feel in my bones that you will come out of this and succeed and prosper...maybe to help others that go through this. Please know I am thinking of you and wishing you the very best! Please don't see yourself as a failure, please don't consider suicide or other self harm. Your family would be devasted and see it as their failure. You are a strong person who is going through an extremely difficult time but you will pull through! Please hang in there and grit your teeth through the dependent stage because I believe it will not be a permanent state for you. Give yourself a break and have as much compassion and love for yourself as you have for others. Keep us informed as to how things are going and know that your E family supports you, cares for you and that there are some others who may have a greater understanding of your situation than I am able to now. Just wanted to express my support and good wishes!
BarbG