I feel like I should start a save the seagull campaign. But really I know how you feel. There is no doctor I have ever been to that has said “You are now cured or you know what to do now, no need to come back” Once they get their meat hooks in they never let go, why should they, it is their revenue stream.
I tell all my doctors that I often suffer from medical system fatigue/burn out. When they say come back in 4 months I’ll say how about 6, then I remind them of the fatigue/burn out thing. It turns into a negotiation, sometimes I win, sometimes not. It helps if you will try to act exasperated when entering into these negotiations.
It may not always work but I feel better knowing I tried.
Mohe, I am really frustrated with the medical system too. I am sorry that they are making you jump through hoops.
My best friend, whom I have known for decades, has epilepsy. She takes several meds for it and does well. She has worked all of her life, and drives too. I have never noticed her meds interfering with her life at all. Of course she doesn’t have the option of not taking meds, or her epilepsy would be entirely out of control. She is very grateful that there are meds to help control her body.
I feel for you, and it’s very hard NOT to think think that this IS all about the money…I hope you can find your way through all the pointless beurocracy. Good luck!
I know how you feel about the inconvenience and annoyance, but you are very lucky to have access to good medical care. Many don’t. I’m in Canada so it’s all free for us here which is wonderful, but if you have to pay there, I can understand if you are feeling put upon so your provider can make money for trivialties. It does happen.
This does suck. You are very funny and eloquent though. It’s horrible to have to guess at motives in a health system like this and operate as your own advocate & health co-ordinator on so many levels just to keep going.
I have a couple of things to deal with too but thankfully live in a country with a far easier, more compassionate (although still exhausting) system.
The only good thing I could imagine ‘possibly’ coming out of this (ok, thump me because this is ignorant I know) is the slither of a chance that you might get a negative diagnosis, and it turns out you actually don’t have epilepsy.
I’ve occasionally gone to a new doctor and it’s turned out to be a huge sigh of relief (even though a pain in the butt). How cool if epilepsy itself had been re-thought & you were off the hook.
I’m sorry to hear about your appointment trials and tribulations. Just FYI - I have T1 and epilepsy. I take meds for both, including 400mg of Tegretol per day for latter. I envy your mobility. Since I’ve never gone for 2 years without a seizure, I have never even learned to drive. While I sympathize with you for the prospective bus travel, I’m also appreciative of the fact that people like me can’t get on the road behind a while.
(When I had a seizure in the past, it was difficult to distinguish whether it was an epileptic seizure or a hypoglycemic episode. Before CGM, I would never feel like doing a finger stick as I recovered. The MDs can often confuse the two.)
Even with the meds you have seizures? Thats part of my concern - that I wont ever even know if the meds are working, so it seems pointless to take them. I find I do OK now that I know about it and make a strong effort to get enough sleep. Of course, nothings guaranteed. I dont think its good that this condition has entered into my medical record.
Do you know anything about Kepra? Thats what was prescribed last time. I’m afraid of the side effects.
I have heard good things about Kepra. It is one of the drugs of choice. I take a large dose of Tegretol twice a day. You would only need small dose of Kepra if your seizures only come when you’re overtired. It would provide authorities - DMV, insurance companies etc. - with the confidence they need to support you driving a vehicle. They’re business is risk management.
I see. The DMV system is in terrible flux here. I can barley maintain a drivers licence due to diabetes paperwork.Last time I submitted a diabetes form, they threatened me with jail time. Every piece of paper that goes into that system might result in you being arrested for something. It too high risk. Its been broken for 30 years. They will never fix it.
I couldn’t find the funny video with the old lady complaining about being arrested for stealing a vehicle after she transferred a title. They call our DMV system ‘the goat rodeo.’
Last year I spent hours every week trying to maintain my ability to drive because of DMV paperwork. I was often not successful. I can’t do this anymore. I am a boycotting any further involvement in state regulation of my driving privileges. They aren’t up to the challenge.
QUESTION: Why is she standing in front of a photo of a bunch of people with anonymous masks at min 4:30? Is that some kinda hacker joke? What the heck?!?! This is over the top.
