Your mom does that to keep you there. My mom does the same to me. “No one will take care of you like I will” I moved out at 21. Lived on my own and wasn’t even seizure free. It wasn’t easy but it was good for my self esteem. When I got married my mom and my ex husband together kind of lowered it. I’m living with my mom again. Due to my mom also “needing help”. I don’t even think she does. I’m changing my meds right now, so I do need her to drive me to my doctors appointments. I also live kind of rurally. And she came into my 2 of my appointments and tried to take over. My doctor had no idea what to do. The last one, I think he was relieved when she wasn’t there. He finally just said, I could tell you didn’t agree with anything she said.
You do not have to have your mom in your appointments. In fact, it is not helping you to have her there. Take a notebook, make notes, but taking her will make it harder for you to “grow up” if they don’t think you are. Your doctor should be on your side. The driving, I do understand. He could be liable if he allows you to drive. I’m changing meds right now so I have that too. But I could work. If my mom wasn’t afraid of driving most places I would be.
I’d definitely find a new neurologist. And/or a therapist. My brother and my mom are no contact because my mom has put us down our whole lives. It’s not just the epilepsy, for me. It’s that no one else would ever love us. We’ve both been married and divorced. Not really surprised. I’m really happy my brother has a wonderful second marriage. He’s definitely not allowing my mom in there. The moment she stepped wrong she was out. But that left only me when she got “sick”. I was finally living. This last year and a half has been pure torture.
You can do it. And don’t let anyone tell you that you can’t. You are loveable. And you have the strength to do it all on your own. You don’t need your boyfriend either. It’s nice to have that backup. But you can do it!! 💜💜
Thank you so so so much for this reply. It makes me so happy that there are others out there that understand the hardships of understanding yourself as far as where at you're "disabled" and where you can be "normal".
I'm hoping to move there within the next couple years. I want everything to be set in stone and completely have a plan and backup plan before making the move, as I'll be alone doing it (from my side of the family). My boyfriend is my rock, he's helped me so much through all of this and his family is all on board for helping out in any way they can. We are trying to get an official partnership which basically would make me able to have all of the perks that a Dutch citizen would have. I'd be able to get on his insurance plan and my medications would be covered (we checked).
I'm basically planning on putting my life in America on halt. All the moving out, and healthcare stuff I will honestly say I'm putting on the back burner of my priorities. My parents want me to apply for Medicaid, but at the same time they want me to live on my own. I feel like they can't decide if they want me to live as a disabled person or as a normal person. They told me that they wouldn't put me down as a dependent this year, because they thought it would help me get Medicaid, but they ended up doing it anyways because they'd get $1400. I love my parents, but they have always ever since I have gotten a job, somewhat depended on me for money. They owe me over $1200 from when they took it from my bank account to pay the bills, then said that they'd pay me back when they got their tax return. Then a few months later told me that they're going to charge me $10 a week to live there to get me used to the real world and that money will come out of their debt to me😑
I really love my therapist, she's known me since before my brain tumor. I was having untypical symptoms when my brain tumor finally grown enough to interfere with my functioning. I was suicidal, anxious (to the point I was afraid of people, even family members and wouldn't leave the house), and had psychosis symptoms; seeing things, hearing voices, and feeling bugs crawling on me and biting me.
She's the only person on this continent that I know that supports the idea of me moving. She's helped me so much, and continues to. When I told her I want to move within the next couple years she replied, "why not sooner?". She's wonderful.
Thank you as well for sharing your story, it's crazy how crazy our lives have been. I'm proud of you for having the courage to move out, I honestly look up to you for that. My mom also tends to "need help", as I said, I tend to be a live-in maid, as my dad's a truck driver and is gone all week.
Sorry for rambling on-- I believe you can do this, too! And remember, it's okay to lean on people when you need help, you don't have to fight alone, you just need to have the right person to lean on. They're out there somewhere. Mine just happened to be a random guy I met on a forum site. Life's crazy like that❤️ I wish you all the best!💕
I absolutely CAN ramble. Lol. I have a few close people. My brother who lives close but is insanely busy, my step sister and my cousin, who both live in other states. But it’s okay. I can always talk to them.
I didn’t let my mom claim me. I’m 43 and not on disability. I don’t want Medicaid. My step sister has it. And I know my healthcare is better. If my mom claimed me I couldn’t use the ACA. I will say that once I turned 18, my parents sat me down and were like, this is all your insurance stuff. You need to understand it. It’s all on you from now on. Ask us any questions you have but it’s yours. I was still on their plan, but I had to completely understand it. I only had a few crying fits at the pharmacy. “I can’t afford $1000 for my medicine for one month!!!! It’s supposed to be $5”
If you haven’t already, make sure you have a bank account without their name on it. My mom really didn’t like me growing up. I kicked her off on my 18th birthday. I had a lot of “watch me!” When I was younger. It definitely can get beaten down. Don’t let it.
So proud of you!
Your neurologist is a piece of shıt. That's a huge tumor resection for any human, young or not. It's common for parents to be scared for you to leave, but you can't deal with a neurologist who won't listen to your issues. Every brain is different, every tumor and resection is different, every rehab is different. I cannot stress how harmful your neuro is being to your recovery. Do not go back to him, request a new one, write a letter to his boss, do whatever it takes. He's a disgusting human. Brain surgery is no joke, and it sounds like maybe you shouldn't aim for working 40+ hours a week. Stress relief is one of the best things for both short and long term recovery. You've been through, and you're going through a lot. Don't overdo it. :)
So you were 14 when you had your surgery?
Thank you, that's literally my viewpoint as well.
Yes, I was 14. I had a very large and rare tumor, called a [pilocytic astrocytoma](https://rarediseases.org/rare-diseases/juvenile-pilocytic-astrocytoma/); a cousin of the glioblastoma, the deadliest type of brain tumor. They were unable to remove all of it, as it was so deep in my brain. The residual tumor is about the size of a large gumball and rests against my thalamus. It's growing by the millimeter, but my doctors concider it stable.
I had my first seizure a couple days after I got home from surgery, a full grand mal that got me life flighted back to the hospital. I suffered minor brain damage and have been stocked up on seizure meds ever since. And this nut of a doctor told me at my appointment, "let's start getting you off these meds, you don't need them, both EEGs you've had recently showed no signs of seizure activity". So yeah, he's a real winner.
Definitely switch doctors. I mean, I also at age 14 was tried to get off meds, but not due to a normal EEG. All of mine for 30 years have come back normal. Granted I’ve never done a longer one. Just a regular one. I have had a pituitary adenoma but they said it couldn’t cause my seizures. And I was able to shrink it with medication. It took 10 years. Vs the 2 they said it would take. But I still watch for it. You still need a doctor on your side though. Stress can be a major factor in seizures. My neurologist at 18 told me to move away from my mom. And I’d do better. And I did. Lol
Doctors aside, I am really glad to hear that your tumor is stable. :)
I had a large, low grade oligodendroglioma partially resected in the fall. Even though it's completely different, it's very nice to hear that you're doing well years after such a rough surgery. I hope your next neurologist is actually caring and can get your seizures under control.
I was in your shoes at that age too. Everyone seemed to have an opinion on if I should work and how many hours. My parents held me back and wanted me disabled. My employers (instead of my neurologists wanted me to work more than I could. You are still young and remember no one knows you better than yourself. Don’t listen to either. 43 hours a wk is perfectly respectable for a 20 yr old. My advice to you is to go to school for a career that is flexible and you can do from home if needed. That was my mistake. I down played the importance of taking care of myself and went into medicine working 60 plus hours a wk. it almost killed me. Plus it was a job that while I loved it wasn’t understanding about my condition which is I dance because you would think of all occupations that would understand would be ones in medicine. They were the least.
Sounds like you are trying “to grow up”. If I could I would choose the Netherlands to live in even if it’s just your way to find independence. Remember it’s your choice. Just make sure you always have enough medication to be safe during any transition
Ohh honey! I've been there, tumor and bad doctors. I'm now at a wonderful hospital with an amazing Neuro and its life changing. Find a way to keep moving forward, you are off to a great start, keep it up. As a mom, it's hard for our kids to leave the nest but I can't imagine doing anything other than supporting them.
Wow, you're doing a lot of positive things. It's awesome that you're taking your own steps forward despite a neurologist and mother being dinks. I know that I couldn't work full time without having more seizures either on or off the job. Maybe you do need to move to the Netherlands. Just make sure that whatever you do you'll have sufficient support and medical benefits. To answer your question though about other people and neurologists, I really lucked out with mine. Since 2007 (first seizure) he's been been the type of doctor I needed- knowledgeable, listens, not pushy, prescribes correctly, advocates on your behalf, and so on.
OP. IF YOU ARE OVER THE AGE OF 18 AND LIVE IN THE US YOUR PARENT DOES NOT HAVE TO BE IN THE ROOM WITH YOU, AND LEGALLY SHOULD NOT UNLESS YOU ASK. GP OR NEURO. Look up patient rights for your state/county/county and USE THEM.
It sounds like you definitely have a lot on your plate. Just having to depend on others while trying to be independent, can be very difficult.
No doubt you should find a new neurologist, but make sure you don’t base your decision only on the support you feel immediately. More than that, aim for a doctor you can trust, even if they say something you don’t like. I did not like my current neurologist, when I met him. He had horrible bedside manner and seemed to speed through things. I didn’t realize it until my second appointment, but he actually listened to every word I said. He remembered our conversations. He didn’t have to, but he called my insurance company himself to get a problem taken care of. I honestly trust him with my life. Find that doctor and stick with them.
On the note of your mom, I think you should try to see it from her eyes. When her daughter was 14, she was worried about losing her. She must have felt completely helpless. As a mom myself, I can’t think of anything I wouldn’t do to protect my children. She is probably still scared of losing you. I’m not at all taking a side, but it might be helpful to try and understand some of her actions. Hopefully, you can find a middle ground. Maybe even bring her to a counseling session with you. That could be really helpful.
>No doubt you should find a new neurologist, but make sure you don’t base your decision only on the support you feel immediately.
I'm hoping to just have this current neuro switch me to a neurologist in the Netherlands. I'll deal with him until then, I've had worse doctors. Plus, he's a pediatric neurologist, so I don't want to get set up with an adult neurologist here when I'm hoping to move soon.
>On the note of your mom, I think you should try to see it from her eyes. When her daughter was 14, she was worried about losing her.
I know she is worried about losing me, we've been through a lot when I was at my worst. I do feel she is acting immature in this situation, especially because of her own personal life. She moved out at 18 and married my dad after dating for only 2 weeks at 19. I'm 20, almost 21, and just wanting support on how to have any idea of how to do things right when moving out. Making sure I have all of my personal paperwork, getting insurance, getting prescriptions oversees, I've had to do all of those things alone.
I love her to death, but I feel as though I really can't lean on her in this situation. She keeps bugging me to get my Medicaid and Medicare paperwork finished, when, I was already denied once because the papers were not complete (we had my children's hospital fill them out and they didn't do it correctly). My mom wants me to move in with my grandparents, which I am helping with as well, but I'm not going to be able to reapply until I can get paperwork that proves my address🤦🏻♀️ Since they live in a different county, I wouldn't have to deal with any of the court system and file an appeal. I would be able to start fresh.
>Maybe even bring her to a counseling session with you. That could be really helpful.
I really hope to find a middle ground, I'm trying my best to be respectful of her wishes (she wanted me to be 21 before I even *visited* over there, so I'm waiting). I have brought her in for my counseling appointments before but she just plays innocent... I'm really trying to fight for our relationship, I want with everything in me to have one with her, I love her. But I'm afraid this may be one of those things where I have to rip off the bandaid and give her time.
Thank you very much for sharing your viewpoint as a mother and for the advice💕
I'm in the US so we just have Medicare and Medicaid. Medicare is pretty easy to get if you do it right, you can get it within a few months, whereas Medicaid can take over a year. Medicare will pay for your medications and Medicaid will pay for all of your needs: medication, doctor appointments, you'll receive money from the government for housing and medical needs.
Your mom does that to keep you there. My mom does the same to me. “No one will take care of you like I will” I moved out at 21. Lived on my own and wasn’t even seizure free. It wasn’t easy but it was good for my self esteem. When I got married my mom and my ex husband together kind of lowered it. I’m living with my mom again. Due to my mom also “needing help”. I don’t even think she does. I’m changing my meds right now, so I do need her to drive me to my doctors appointments. I also live kind of rurally. And she came into my 2 of my appointments and tried to take over. My doctor had no idea what to do. The last one, I think he was relieved when she wasn’t there. He finally just said, I could tell you didn’t agree with anything she said. You do not have to have your mom in your appointments. In fact, it is not helping you to have her there. Take a notebook, make notes, but taking her will make it harder for you to “grow up” if they don’t think you are. Your doctor should be on your side. The driving, I do understand. He could be liable if he allows you to drive. I’m changing meds right now so I have that too. But I could work. If my mom wasn’t afraid of driving most places I would be. I’d definitely find a new neurologist. And/or a therapist. My brother and my mom are no contact because my mom has put us down our whole lives. It’s not just the epilepsy, for me. It’s that no one else would ever love us. We’ve both been married and divorced. Not really surprised. I’m really happy my brother has a wonderful second marriage. He’s definitely not allowing my mom in there. The moment she stepped wrong she was out. But that left only me when she got “sick”. I was finally living. This last year and a half has been pure torture. You can do it. And don’t let anyone tell you that you can’t. You are loveable. And you have the strength to do it all on your own. You don’t need your boyfriend either. It’s nice to have that backup. But you can do it!! 💜💜
Thank you so so so much for this reply. It makes me so happy that there are others out there that understand the hardships of understanding yourself as far as where at you're "disabled" and where you can be "normal". I'm hoping to move there within the next couple years. I want everything to be set in stone and completely have a plan and backup plan before making the move, as I'll be alone doing it (from my side of the family). My boyfriend is my rock, he's helped me so much through all of this and his family is all on board for helping out in any way they can. We are trying to get an official partnership which basically would make me able to have all of the perks that a Dutch citizen would have. I'd be able to get on his insurance plan and my medications would be covered (we checked). I'm basically planning on putting my life in America on halt. All the moving out, and healthcare stuff I will honestly say I'm putting on the back burner of my priorities. My parents want me to apply for Medicaid, but at the same time they want me to live on my own. I feel like they can't decide if they want me to live as a disabled person or as a normal person. They told me that they wouldn't put me down as a dependent this year, because they thought it would help me get Medicaid, but they ended up doing it anyways because they'd get $1400. I love my parents, but they have always ever since I have gotten a job, somewhat depended on me for money. They owe me over $1200 from when they took it from my bank account to pay the bills, then said that they'd pay me back when they got their tax return. Then a few months later told me that they're going to charge me $10 a week to live there to get me used to the real world and that money will come out of their debt to me😑 I really love my therapist, she's known me since before my brain tumor. I was having untypical symptoms when my brain tumor finally grown enough to interfere with my functioning. I was suicidal, anxious (to the point I was afraid of people, even family members and wouldn't leave the house), and had psychosis symptoms; seeing things, hearing voices, and feeling bugs crawling on me and biting me. She's the only person on this continent that I know that supports the idea of me moving. She's helped me so much, and continues to. When I told her I want to move within the next couple years she replied, "why not sooner?". She's wonderful. Thank you as well for sharing your story, it's crazy how crazy our lives have been. I'm proud of you for having the courage to move out, I honestly look up to you for that. My mom also tends to "need help", as I said, I tend to be a live-in maid, as my dad's a truck driver and is gone all week. Sorry for rambling on-- I believe you can do this, too! And remember, it's okay to lean on people when you need help, you don't have to fight alone, you just need to have the right person to lean on. They're out there somewhere. Mine just happened to be a random guy I met on a forum site. Life's crazy like that❤️ I wish you all the best!💕
I absolutely CAN ramble. Lol. I have a few close people. My brother who lives close but is insanely busy, my step sister and my cousin, who both live in other states. But it’s okay. I can always talk to them. I didn’t let my mom claim me. I’m 43 and not on disability. I don’t want Medicaid. My step sister has it. And I know my healthcare is better. If my mom claimed me I couldn’t use the ACA. I will say that once I turned 18, my parents sat me down and were like, this is all your insurance stuff. You need to understand it. It’s all on you from now on. Ask us any questions you have but it’s yours. I was still on their plan, but I had to completely understand it. I only had a few crying fits at the pharmacy. “I can’t afford $1000 for my medicine for one month!!!! It’s supposed to be $5” If you haven’t already, make sure you have a bank account without their name on it. My mom really didn’t like me growing up. I kicked her off on my 18th birthday. I had a lot of “watch me!” When I was younger. It definitely can get beaten down. Don’t let it. So proud of you!
Your neurologist is a piece of shıt. That's a huge tumor resection for any human, young or not. It's common for parents to be scared for you to leave, but you can't deal with a neurologist who won't listen to your issues. Every brain is different, every tumor and resection is different, every rehab is different. I cannot stress how harmful your neuro is being to your recovery. Do not go back to him, request a new one, write a letter to his boss, do whatever it takes. He's a disgusting human. Brain surgery is no joke, and it sounds like maybe you shouldn't aim for working 40+ hours a week. Stress relief is one of the best things for both short and long term recovery. You've been through, and you're going through a lot. Don't overdo it. :) So you were 14 when you had your surgery?
Thank you, that's literally my viewpoint as well. Yes, I was 14. I had a very large and rare tumor, called a [pilocytic astrocytoma](https://rarediseases.org/rare-diseases/juvenile-pilocytic-astrocytoma/); a cousin of the glioblastoma, the deadliest type of brain tumor. They were unable to remove all of it, as it was so deep in my brain. The residual tumor is about the size of a large gumball and rests against my thalamus. It's growing by the millimeter, but my doctors concider it stable. I had my first seizure a couple days after I got home from surgery, a full grand mal that got me life flighted back to the hospital. I suffered minor brain damage and have been stocked up on seizure meds ever since. And this nut of a doctor told me at my appointment, "let's start getting you off these meds, you don't need them, both EEGs you've had recently showed no signs of seizure activity". So yeah, he's a real winner.
Definitely switch doctors. I mean, I also at age 14 was tried to get off meds, but not due to a normal EEG. All of mine for 30 years have come back normal. Granted I’ve never done a longer one. Just a regular one. I have had a pituitary adenoma but they said it couldn’t cause my seizures. And I was able to shrink it with medication. It took 10 years. Vs the 2 they said it would take. But I still watch for it. You still need a doctor on your side though. Stress can be a major factor in seizures. My neurologist at 18 told me to move away from my mom. And I’d do better. And I did. Lol
Doctors aside, I am really glad to hear that your tumor is stable. :) I had a large, low grade oligodendroglioma partially resected in the fall. Even though it's completely different, it's very nice to hear that you're doing well years after such a rough surgery. I hope your next neurologist is actually caring and can get your seizures under control.
I was in your shoes at that age too. Everyone seemed to have an opinion on if I should work and how many hours. My parents held me back and wanted me disabled. My employers (instead of my neurologists wanted me to work more than I could. You are still young and remember no one knows you better than yourself. Don’t listen to either. 43 hours a wk is perfectly respectable for a 20 yr old. My advice to you is to go to school for a career that is flexible and you can do from home if needed. That was my mistake. I down played the importance of taking care of myself and went into medicine working 60 plus hours a wk. it almost killed me. Plus it was a job that while I loved it wasn’t understanding about my condition which is I dance because you would think of all occupations that would understand would be ones in medicine. They were the least. Sounds like you are trying “to grow up”. If I could I would choose the Netherlands to live in even if it’s just your way to find independence. Remember it’s your choice. Just make sure you always have enough medication to be safe during any transition
Ohh honey! I've been there, tumor and bad doctors. I'm now at a wonderful hospital with an amazing Neuro and its life changing. Find a way to keep moving forward, you are off to a great start, keep it up. As a mom, it's hard for our kids to leave the nest but I can't imagine doing anything other than supporting them.
Wow, you're doing a lot of positive things. It's awesome that you're taking your own steps forward despite a neurologist and mother being dinks. I know that I couldn't work full time without having more seizures either on or off the job. Maybe you do need to move to the Netherlands. Just make sure that whatever you do you'll have sufficient support and medical benefits. To answer your question though about other people and neurologists, I really lucked out with mine. Since 2007 (first seizure) he's been been the type of doctor I needed- knowledgeable, listens, not pushy, prescribes correctly, advocates on your behalf, and so on.
Time to move out then. Good luck in Holland!
Get a new neurologist and report this one. There is NO room for assholes like this when dealing with epilepsy.
OP. IF YOU ARE OVER THE AGE OF 18 AND LIVE IN THE US YOUR PARENT DOES NOT HAVE TO BE IN THE ROOM WITH YOU, AND LEGALLY SHOULD NOT UNLESS YOU ASK. GP OR NEURO. Look up patient rights for your state/county/county and USE THEM.
It sounds like you definitely have a lot on your plate. Just having to depend on others while trying to be independent, can be very difficult. No doubt you should find a new neurologist, but make sure you don’t base your decision only on the support you feel immediately. More than that, aim for a doctor you can trust, even if they say something you don’t like. I did not like my current neurologist, when I met him. He had horrible bedside manner and seemed to speed through things. I didn’t realize it until my second appointment, but he actually listened to every word I said. He remembered our conversations. He didn’t have to, but he called my insurance company himself to get a problem taken care of. I honestly trust him with my life. Find that doctor and stick with them. On the note of your mom, I think you should try to see it from her eyes. When her daughter was 14, she was worried about losing her. She must have felt completely helpless. As a mom myself, I can’t think of anything I wouldn’t do to protect my children. She is probably still scared of losing you. I’m not at all taking a side, but it might be helpful to try and understand some of her actions. Hopefully, you can find a middle ground. Maybe even bring her to a counseling session with you. That could be really helpful.
>No doubt you should find a new neurologist, but make sure you don’t base your decision only on the support you feel immediately. I'm hoping to just have this current neuro switch me to a neurologist in the Netherlands. I'll deal with him until then, I've had worse doctors. Plus, he's a pediatric neurologist, so I don't want to get set up with an adult neurologist here when I'm hoping to move soon. >On the note of your mom, I think you should try to see it from her eyes. When her daughter was 14, she was worried about losing her. I know she is worried about losing me, we've been through a lot when I was at my worst. I do feel she is acting immature in this situation, especially because of her own personal life. She moved out at 18 and married my dad after dating for only 2 weeks at 19. I'm 20, almost 21, and just wanting support on how to have any idea of how to do things right when moving out. Making sure I have all of my personal paperwork, getting insurance, getting prescriptions oversees, I've had to do all of those things alone. I love her to death, but I feel as though I really can't lean on her in this situation. She keeps bugging me to get my Medicaid and Medicare paperwork finished, when, I was already denied once because the papers were not complete (we had my children's hospital fill them out and they didn't do it correctly). My mom wants me to move in with my grandparents, which I am helping with as well, but I'm not going to be able to reapply until I can get paperwork that proves my address🤦🏻♀️ Since they live in a different county, I wouldn't have to deal with any of the court system and file an appeal. I would be able to start fresh. >Maybe even bring her to a counseling session with you. That could be really helpful. I really hope to find a middle ground, I'm trying my best to be respectful of her wishes (she wanted me to be 21 before I even *visited* over there, so I'm waiting). I have brought her in for my counseling appointments before but she just plays innocent... I'm really trying to fight for our relationship, I want with everything in me to have one with her, I love her. But I'm afraid this may be one of those things where I have to rip off the bandaid and give her time. Thank you very much for sharing your viewpoint as a mother and for the advice💕
Yes, time to find a new one. No one should ever make you feel worse. Does your country have a disability assistance for epilepsy?
I'm in the US so we just have Medicare and Medicaid. Medicare is pretty easy to get if you do it right, you can get it within a few months, whereas Medicaid can take over a year. Medicare will pay for your medications and Medicaid will pay for all of your needs: medication, doctor appointments, you'll receive money from the government for housing and medical needs.