Reposted from Facebook, because dear mighty Isis, I am so exhausted...
Okay. Before I do this, I must post a disclaimer: This is not directed at anybody in particular. This is not in response to anything anyone has said. I am not upset or angry at anyone. This entire thing, in fact, has been something I have been writing for over a week and have been trying to edit it down to the bare bones. This, in fact, is dedicated to all the disabled and chronically ill people who have been trying to reassure friends and strangers that they and their doctors know what they're doing.
Also, I guess I should add that I am not everybody and everybody is not me. I really don't want or mean to sound snarky, but I've had recent discussions with ALL my doctors.
The neurologist and pain specialist both said in slightly different words, and I quote, "Well, you seem perfectly fine, considering. Sometimes the medications can't hold back every single symptom. That's nothing to worry about. Your breakthrough seizures haven't put you in the hospital. And just because someone on a similar drug hasn't had a seizure in years doesn't mean that your nervous system runs the same way. Don't worry. Just keep taking the pills as recommended, and don't worry about all the horror stories out there. You are you, your body is yours, your brain is yours, and only you know how you will be truly affected. You are on very high doses of medications. Sometimes they may not be affective if you've been under stress. This happens all the time. I'd rather not put you on new drugs or higher doses right now. Just monitor yourself, and try not to listen to people who insist that you need something better. It obviously causes extreme anxiety for you. The only one who knows would be you, relayed to me, and I'm your specialist doctor, after all. So, please try to relax, okay? You're fine!"
In fact, I wrote all that down while I was at their offices in order to transcript it online.
So, I must say this now: Please please do not assume that my health is poor because my medications are not totally curing or stopping my various symptoms. No matter who you are and who you know and what you believe, you are not inside my body and brain, and you are not my doctor, any of them. My most recent blood and urine tests showed that my body is saturated with medications so much that I was told to cut back on one drug from every day to every two days.
I hope this helps reassure you that I really am fine, and that the only help I need is from my doctors. Big Pharma is not always evil. It just depends on the doctors you see and how different drugs work in your own body.
In conclusion: I love you all. I thank you deeply and sincerely for all your concern. But I put trust in my doctors, whom I have known for a long time. I put trust in the drugs that have kept me functioning for years. I know I post a lot about my seizures, my depressive episodes, my chronic pain flares. And yes, Facebook is not a good place for that, because people get the idea that all I do is whine, cry, and throw tantrums about my disabilities. Facebook is not like Livejournal or blogs: It won't be like a record of events. And so, my friends often wonder if my treatments are even working. They are. My fucking gods, they are working. But unless you have the medical conditions that I have, unless you understand my brain completely, unless you are on the types of medications I am on, it is going to be fairly difficult to understand. And so I beg you: Please stop telling me that my drugs might not be working properly. It's not your place to say this. In fact, I will give you this: Email me, and I will give you the names and phone numbers of all my doctors, specialists, and nurses. I will give you the names and doses of all my prescription drugs. You can call all my doctors and voice your personal concerns on my behalf. Maybe they will agree. Maybe they will commend you. I don't know. It might be a fascinating thing. But in the meantime, I guess I will have to cut down severely on what I talk about on Facebook regarding my health. Because I don't know how many more times I can compare medications to levees, dams, and superheroes that can only do the best they can, and I don't know how many times I can explain that just because Person A has been doing just fine for many years does not mean that I am just like Person A. Everybody and everybrain is different and reacts differently.
I desperately hope that this has helped explain things. I know we've all been feeling like broken records. So. My goal from now on is to gradually stop telling Facebook about my seizures. And then I will gradually stop telling Facebook about my fibromyalgia flares. And then the depression. And then all the other disorders. And soon enough, Facebook will just hear about happy things from me. No. That's a lie, and I admit it. I will still post about those things. Because my fellow pain warriors need my support, since we have all already established our tiny support groups. I would be abandoning them. But I have promised myself that I will cut back on public status posts regarding epilepsy, because that is what brings out most of the concern, and I don't want the concern, since it reminds me too much of the fake and nasty online statements of "I'm just concerned for that person's health even though I don't know that person" when it's only an excuse to mock and tease the person. I know full well that it is not what is happening with me, but it happens with many of my friends, and I have a reflexive reaction that makes me want to snarl. I welcome friendly concern, I really do. But please don't force it. Voice your concerns, then back away. I will smile and thank you, and I will continue updating my doctors. That is all anyone needs to know about my health.
Again, if anyone feels offended, please know that none of these statements are directed at anyone. And if I can't be convincing, then all I can do is apologize. This is my life. This is no one else's life.
Also, wow, my hands hurt. That was a lot of typing in just a few minutes. I need a break.
I love you all so, so much. Thank you for caring about me. Just please keep in mind that my health issues are between me and my physicians. Thank you.