Every day I take my CBD oil with a shot of hot coffee. This is today’s shot.
I didn’t think I would think of anything for this 50 Questions post but I finally thought of something I can ask for advice from my readers! I’m warning you, there is a wall of text coming.
I have little to no appetite ever since May 2015. I got sick with a stomach bug just like everyone else. I recovered just like everyone else. The only difference was that I had no appetite.
I am not hungry. If I decided to wait until I was hungry to eat, I would starve to death because I am not hungry at all. I forgot what it feels like anymore.
I do eat. I make myself eat at least one meal a day. I use the term “meal” loosely here. I get thrilled when I hit over 1000 calories a day. I do watch my calories to make sure I am getting enough. Some days are better than others though.
The lowest day was 433 calories. Continue reading
They took me off Trileptal (THANK GOODNESS!) and have me on Ativan as a preventive medicine. If I feel like I am going to have a seizure, then I take one.
I take one about every other day. I am honestly not sure sometimes if I should take one or not. Like, my head hurts on the left side a lot so I am not sure if that is a warning or just a “I always have a headache thanks to fucking Trileptal” or what. Just when I got my headaches under control, they put me on a medicine that brings that back… with a vengeance.
Anyway, Ativan, I think, is helping some. But man does it kill all my motivation. At least I am not seriously depressed anymore. I am coming out of that. But the Ativan makes me just want to sit on my ass and watch Netflix all day, play on reddit, and Facebook, and basically vegetate. On an up note: I feel way more with it. Like I feel like my brain is functioning at a better level now. I just don’t really want to do anything with that performance except stare at stupidness all day.
I am really hoping it is just my brain’s way of dealing with all the headaches from the Trileptal and if I can get my headaches under control again, I will have a little more motivation.
On a down note: is that a thing? Down note? Every time I get excited about food, I eat about four bites and I want nothing to do with food about another day. I am having to force myself to eat again. I made oatmeal this morning. I made it one bite in and I was done. I seriously need to up my marijuana dose or something.
Anywhoodles, I am working on functioning at this point. I will blog when I can make myself do it. I did today because I finally remembered to charge my tablet.
I went to my new Neurologist yesterday. I was pretty leery of going to one after the last three nutballs I saw. But this guy… I like him! I can work with this guy!
He explained epilepsy to me in easy-to-understand terms. YES I have seizures. My left temporal lobe is constantly trying to misfire (Didn’t know that!). He said that I have more than just absence seizures. While I do have those, that’s the constantly trying to misfire part that comes through for a second or two. He explained the other types of seizures too and made it make sense by saying “Imagine that your brain is a campfire spot with all the kindling and it’s ready to set on fire.” (Great analogy) and then explained the little misfires are the spark. When it catches on a small piece (in the temp lobe) that is the simple partials. And when it catches on a little bigger piece, that is a complex partial. And then went on to explain all the way up to tonic-clonic. He explained the seizure threshold. All his explanations were so much better than what I found online. And they made sense.
I have gone to neurologists before… but he is the first one to EXPLAIN everything to me. Even though I have a good grasp on epilepsy because of research on my own, I was totally THRILLED to have a doctor explain everything. There were still things I learned.
“Trouble with Doctors”
He did mention how he sees I had trouble with the other doctors. (You don’t say!) Asked about that. I decided to explain it being as nice as possible and ended with “when I trust someone, I trust them wholeheartedly. But when I lose that trust, they never get it back. I NEED to be able to trust my doctor.” He said he was cool with that and understood some people just don’t click. (that was a nice way to put it) and then I told him about Dr Vindictive and that whole clusterfuck of a mess. Although I used actual names in the office. I explained that my regular neurologist put stuff in my chart that wasn’t true or even about me. And the other concussion neurologist put things in my chart saying that I said XYZ when I most certainly did not.
He did ask what I was expecting of him and I was honest. I said “I don’t know. But I know I need to have a neurologist follow me for like safety and stuff.” He chuckled at that.
Then we went over medications. I told him I am on marijuana. He is happy about that because it is such a miracle drug. That surprised me because all the other neurologists… OMG! The first was cool with it until I was actually on it. Then she got weird. The second one (for concussion) was okay with it but didn’t act very okay with it. Like, she SAID she was fine with it, but that was not the vibe I got. The third guy actually put in my chart that I stopped taking it because it didn’t work. Really, motherfucker?
We went over my other reactions to the other anti-epileptics. He explained what they do and did a damned good job of it too. Makes a lot of sense now. Then he asked about the other meds I have tried. He was like “Depakote? (no) Dilantin? (no)” and on and on until he got to Trileptal.
I said “I have the prescription and I filled it too but they said it was for headaches. I don’t have headaches bad enough to take it daily though. I am still waiting.” When I said they said it was for headaches, he gave me a WTF look. He explained that one thing he doesn’t agree with his colleagues on is how they administer medications.
I am totally cool with the difference of opinion. Not slamming the other doctors. Just wanted to throw that out there.
They start with a high dose and work their way down when the side effects are bad. What he likes to do is, unless there is an emergency reason, he likes to start with the lowest dose possible and work his way up. Trileptal has the least side effects. So he does want me to try it (even with the MMJ). I am cool with that.
But I did tell him the huge issue I have with experimenting with mind altering drugs is that when I would call the other doctors, no one would call back. I need to feel like I have support. Don’t leave me hanging with a blistery rash across my back with the weekend coming up! Or never call back until I come in for my next appointment a month later. He promised me that he would call back… it may be 9 or 10 at night, but he is big on returning calls. Okay. I am okay with this.
I will start with 1/4 a pill (75 mg) a day for one week. Then add in a second 1/4 pill dose for a week. Then the third week, I will be on one dose of 1/2 a pill and one dose of 1/4 a pill. The fourth week, I will have one whole pill and day (in two doses), which is a pediatric dose. By then, we’ll have our follow up.
My Brain and a Mini-stroke
I got to see my brain on the MRI which is where he explained the different parts of the brain. My brain is so cute! It barely fits in my skull. No really. The cerebellum actually sits lower than other people’s. It’s not a disorder or anything, mine is just lower.
This is from a message to my friend…
Then… remember how I told you none of the doctors here (not my doc or psychologist though) believed me when I said I had a mini-stroke in 2003? I never mentioned it to [the original neurologist] because why go through that shit again.
He was looking over the results and said “And it does show you had a (something infarct left blablabla). You had a mini-stroke in the past.” And was trying to make it sound like “don’t panic, it’s okay. It is just mentioned on here” and I said “Yup. In 2003.” He was surprised and I told him about that experience…
I was blown away! They fucking made a big deal about me “lying” and they could have found it on an MRI. *grumbles*
Anywhoodles. I feel vindicated, he is mellow and awesome. I feel confident.
So I am totally happy with him. I have my three doctors that I trust. I am happy!
I will still be pulling my records to read my chart though. Trust issues, you know.
I am back! I went to my hearing. I cried. I hate being totally open about my conditions. Sometimes the small delusional thinking that it isn’t really that bad is what keeps me going. Just from going to the hearing and grocery shopping afterwards… I was so bad after the hearing that my son pushed me through the store in a wheelchair… I came home drained and exhausted. I mostly sat in my chair with my feet up the next two days. My friend came over with a letter she wrote for disability. I’ll get that scanned and emailed to my lawyer.
But now, I am feeling a little better, mentally. Physically I feel like I took a trip out-of-town this week LOL. But this morning I was able to make breakfast tortillas for me, Sam, and Miles. Luckily they had everything ready and all I had to do was assemble and make the tortillas. It didn’t take long… just long enough to make me regret getting up and cooking too soon. Meh, at least we had tasty food. I will be in my chair all day now.
And now that I have cried and went to therapy… and got screened for depression and suicidal thoughts (eh, I was having a bad day)… I actually feel a little better. I still and all teary and all that. But I have a crochet hook coming soon so I can make double entrelac scarves. This will be fun! For now, I have projects on Ravelry that I am working on. I finished two.
Here is a gay pride washcloth I made. It looks white in some areas. I swear that is yellow!
And here are tiny hearts I learned to make. I have to think of something to put these on!
I did carry one with me to the hearing. They had to stop once because I was so upset they couldn’t understand me. I went to the bathroom, pulled this out and said, “It will be okay.” a couple of times. I am thinking of making my tattoo have a a heart at the top of the semi-colon. I am still going to get it. Just not sure when.
So… now I will go work on posts for the week.
I feel better. I am okay. The world didn’t end. I have coffee. All is good. And for those who were counting, two snot bubbles.
I haven’t blogged since I got to my ex’s apartment because every time I get on WordPress to post something, the internet falls asleep while loading my “new post” page. This one took 20 minutes to load.
What are 7 things you learned from being a kid?
1. Play when you have the time. Play hard and have fun. I really should have done a lot more of that. You never expect that you are going to hurt a lot and not be able to do what you want. So, while you can, get out and play and have fun!
2. Say NO a lot. Be loud and defiant if you need to. But don’t cave in just because it’s your friend, family, a doctor, or anyone else. If it doesn’t feel right, say no. And don’t be sorry you said it either. Unless it’s a police officer… there are limits.
3. Be honest. Don’t tell lies because it sounds better or you think you will get away with something. It will catch up with you eventually. When it does, you will love the trust of a LOT of people.
4. Eat dessert first. Is it really going to kill you to eat that cake before you eat a salad? No. You eat that cake first and enjoy it. Actually, there were times when dessert was a stand in for breakfast, lunch, or dinner… and we didn’t die!
5. Don’t listen to peer pressure. It will get you into trouble. Remember that time where your friend talked you into throwing the ball at someone’s face during dodge ball… and then you got to run laps the rest of P.E. In adulthood, doing something stupid like that will have you running laps on the jail’s track. don’t do it.
6. Be nice to people and they will be nice to you. I am still not sure about this one. I try to be nice. Mostly, I get people who are nice back. Sure there are people who are mean back. Assume they are having a bad day and don’t let it get to you.
7. Help others. Even if you laugh when your friend falls down (because that looked hilarious!) go help her out and make sure she is okay. Help the elderly, even if they beat your butt when you were little. They have seen some shit and been through hell. Make their day by helping them.
Sorry, no pics or memes today. I am too tired to do that LOL. I will make up for it tomorrow.