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HannahByrd

I can't afford my epilepsy

I am 23.

I hac a seizur when I was 7. After that I would have horrible blinding migrains every few weeks. It was concluded that I have calcium deposits in my brain.I was seizure free untl 2 years ago. I started having seizures out of the blue. I had 2 ER visits bc of seizures. I have both grand mal and focl seizures.

Now I am in a rough spot. It's just one thing layered on top of another..

I can't drive, so I can't have a job & I can't get to school if I don't stay in a dorm. Since I cannot work I cannot afford to stay on campus.
(this tax year I field as independant, so fingers crosses, I might qualify for a grant). Right now I am taking two online classes at a locat tech. They are pretty much pointless classes. I am just taking them singe grace period on my loans won't run out. I just need my 1 last class in my major to graduate. ...

I can't drive, so I can t keep a job. Not having a job means I can't pay for school & I can't pay for dr visits and tests.

Friends and family have paid for several dr visits. But money is thinning out.

I need updated scans - I havnt had any in the past 2 years. I have new seizure related activity happening. I now have spells of double vision. My dr said it could be somthing as simple as a migraine or something more serious like a tumor or new calcium deposits.

I have applied for disability twice. I was denied both times. I have no idea what to do now. I need to find a way to afford my medical needs. Any advice is welcome. I do get my medication at a discount price. I am more concerned about paying for dr visits, tests and ER bills.

Comments

Re: I can't afford my epilepsy

Hannah...I feel your pain.  I would start your inquiries at the state level regarding insurance programs that you qualify for.  What state do you live in?  Most states have a state-run health insurance plan.  In our state, the state benefits are based on your household income.  If you live with your parents, this could get tricky.  However, I would start with your local Department of Human Services and ask questions.  Don't take "no" for an answer...keep asking until someone gets you headed in the right direction.

Epilepsy is ridiculously expensive but you can live a fulfilling life, reaching your dreams, if you don't give up.  School  and employment can still happen; you may need to take a taxi, a bus, or work with student services to find some one who you can rideshare with to class.  Finding a neighbor to take you to work is better than not being employed.   My daughter is half blind due to a brain tumor and struggles with epilepsy as a bonus.  We already know she will never drive, even if seizures are controlled.  So we look for solutions without dwelling on the frustration that a brain tumor dealt her. There are many options and perhaps you aren't looking in the right place or asking the right people.  DON'T GIVE UP!!

Re: I can't afford my epilepsy

Hannah,

I totally know what you are going through. I started having petit mals when I was 8 but didn't start having grand mals until I was 18. I had seizures off and on while going to school so it took me longer than the 4 yrs to graduate but I finally did. IT IS POSSIBLE!! Just don't give up on your dreams....mine was to be a cardiovascular technologist and I was for 5 yrs.

As for disability, I have a great lawyer firm that helped me get disability. It's called Heard & Smith. They are so helpful and go thru all the steps and paperwork you needed to be approved, even if you have been denied before. Call them at 800-584-3700 for a free consultation. Or just go to the website heardandsmith.com if you want to read up on them.

I agree with Mary R. lots of states have state health plans that you could go with until you get your disability settled...then after 6mths on disability you can go on Medicare. As for medications right now, see if your state has a "extra help" program or Medicaid to help. I get mine for no more than $24 for specialty meds...most are just $2.95 and $6.60.

Believe me, I know how frustrating and expensive Epilepsy is but just keep trying to get extra help.

Good luck!

Re: I can't afford my epilepsy

Thank you for the encouragement !! I am nowhere close to giving up :)
I will look into the medication help and the lawyer. I'm curious, how does your epilepsy effect you?
I just feel like I don't have a "serious" enough condition to qualify for any help. My main issue is transportation and medical bills.

Re: I can't afford my epilepsy

Hannah I wish I had some way of personally contacting you. I know of someone who is provided with free Tegretol/Carbamazepine and doesn't want to take it! It just sits in her house yet I know there must be at least one person who could use those pills. Such a shame. Please contact me I am dead serious I can arrange for these pills to be sent to you at least. Problem is I have no idea how the heck to message people on this thing lol.