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I miss my old life


CagedBird

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I went to the neurologist yesterday. Of course the appointment was pointless. He does not want to see me again until I see the epileptologist. I asked him about the seizures and hormones. His only comment was to try to schedule another EEG when I think Im about to get my period so there can be a better chance of me having a seizure. I asked him if he thinks I should just go ahead and get the VNS but he said we need to make sure these are seizures first. He then asked me if I wanted to start vimpat (the seizure med the neurologist in charlotte was going to start me on). I was like I thought you just said you dont even think Im having real seizures? No I dont want to try another seizure medicine! I hate this guy. The only reason he doesnt think Im having seizures is because I always feel them coming and according to him seizures are supposed to be sudden.

 

I am very thankful everyday that I am seizure free and every night that I am seizure/parasomnia free. I always thank God when I get to where Im going and return home that I didnt have a seizure behind the wheel. Today I went back to yoga. It was cancelled last week because of the snow. I did my exercise routine before and after yoga. My instructor is so nice. It felt good rolling around stretching and discovering things I didnt know I could do.

 

Unfortunately I just wish I could live a normal life. I know there's no such thing as normal. but really I miss having my own apartment, making my own money, feeling independent. Watching daytime tv and going to the gym is great. but finding out SSA suspended my Disability with no warning, getting another Medicaid review through the mail, and getting a letter that I need to reapply for food stamps is just annoying. Sure I had days where I didnt want to be at work and I knew I didnt want to make a career out of what I was doing. But I dont want to live in poverty just because doctors are too lazy to fix whats going on in my brain. I worked so hard in work and at school to make sure I would always have the opportunity to get a job and be independent. Its just not fair that I dont have that option right now. I feel so worthless

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Katrina, you are not worthless! Sorry the visit to the doctor was a waste of time. But you got to keep on thinking postive. In time a doctor will find what is going on with you. It is great that you are enjoying yoga, and see you are discovering things that you didnt know that you could do. keep on praying and thanking God, we just got news that my husband nephew has been killed! Life, none of us know's when it will end some let's enjoy it even with the hands we have been deal !

 

Yvonne

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well your not worthless, you have a disability through no fault of your own - that is all encompassing of your life... You went to school , you did well. and some day on a smaller scale you will return to work... you will find out the "root" of the seizures... and according to my hubbies nuerologist some people definatlely feel the seizures coming on... and i worked with a mentally handicapped person who for sure could feel them coming ( he would lay on the floor).. Now you have hoops to jump through just to get back to whee you where ( in terms of assistance) but - this to will pass. ( not a big help - i know) but true. You will advocate for yourself and you will find the cause and a suitable treatment ... think positive..

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Katrina :

 

be kind tto yourself & all we can do is play hand we r dealt to best of your ability. you will find cause for your seizures but till them start being happy in the present moment since nothig is guaranteed in life.

 

Asha

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Katrina, It is a well-documented fact that many people who have seizures also have "auras" preceding them and know they are going to seize. So glad you're gong to another doc .Becky

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