I left off my last entry with the big decision I have made to leave my LLMD. I lied.. it took a few days to get up the guts to call and cancel my appointment, but once I did, I felt pretty good. I don’t really know what is going to happen, all I can do is hope for the best and that I made the right choice. I think I am, and I am going to keep positive about my fresh start.
Once again, there has been some better days, but unfortunately my bad days were pretty bad. First thing in the morning, I have been able to run a few errands, and I have been trying to be crafty with our new vegan and gluten free diet. This week will be our third week? Dave seems to have more energy, as he cut out sugar entirely as well (I never really ate sugar or gluten anyway).
TMI, I have noticed my ahem.. movements have actually been entirely more normal. Maybe it is the break from my antibiotic regiment, but I am going to bet the diet change has made a huge difference. We will eventually slowly add foods back to our diet. At this point, the diet really hasn’t bothered me much. There is a lot more options available than I originally thought.
I even made it out for dinner and a cocktail with our friends. It was nice to get out. Dave and I have been hermits lately, staying home on the weekends, so it was definitely a treat, and I did really well even though it was somewhat loud in there. Maybe the dark lighting offset it, and I had a place to sit away from where it was busy.
During my bad days, I have found myself completely exhausted, hot cold hot cold, excessively sweating, and having my classic POTS symptoms. There has been a few skipped showers and hair washings, and very long naps. At night, I seem to be having a lot more tics, and stuttering to try to get any sort of a sentence out.
My worst day, that I will likely blame on myself as I was a little late in taking my seizure medication, I had to leave work once I remembered I forgot my meds. I wasn’t at work for very long, so it was one short day. I drove straight home and took my meds and relaxed for awhile waiting for them to “sink in”. I had a few things to do: pick up a few items at the grocery store, the bank, Dr S’s office to pick up a referral and pee test for my poor liver function, and swing my the neurologist’s office on my way home to give them the referral and set up an appointment.
It was a very long drive to Dr S’s even though it is less than 10 minutes away. I was really foggy and began to have that “aura”. For those who have seizures, you know what I am talking about. That feeling inside that shit is going to hit the fan.
The girl who works at the desk gave me everything I needed, and I asked her to sit down. I began to feel myself rock back and forth and I had the shakes. I felt like an inferno. I knew it was coming, and I said to her, “DO NOT CALL 911. THEY WILL NOT HELP ME.” Well, that is the truth. They wouldn’t and haven’t. And then, the shit hit the fan, like I knew was going to happen.
Dr S was there in the waiting room, even though I have no recollection as to what happened, and he later emailed me and wrote, “If it is my choice, then I say you shouldn’t do that again anywhere….ever”. I then asked him if it was actually a seizure or my body just going nuts. I have no idea what I was doing, but I was assuming since my body was beginning to lose control, that it at least wasn’t the most awesome thing to watch.
He then wrote that it was hard to differentiate for him as he is a naturopath, not a neurologist, but sat next to me and he watched me for awhile. He told me he would call it a seizure if I wasn’t tuned in and my body was going nuts. Well then. I would at least certainly call it very much “seizure activity”.
Once I came to, feeling wiped out and had a back of the head headache, had a drink of water and sat there for awhile. I was kind of scared that he saw that, as I didn’t want to get dumped once again by another doctor, or get told to stay with my LLMD that I just canceled on. AHHH. He didn’t though, so I was happy. Maybe it is because I now have have an appointment with the neurologist again, so there is another member to my team once again.
He came back out after I had sat for awhile, and told me I could stay as long as I wanted to, and I told him, “I have stuff to do, mind over matter!”, and off I went. I skipped the store, but swung my the neurologist’s office on my way home. I figured if I was going to be the way I was, what better place to be than a neurologist’s office? Right?
As soon as I walked in, I got a big “I remember you!” from the lady at the front desk and the nurse. Haha. I am quite famous wherever I go, apparently. I have an appointment next month, which is earlier than I expected as there is usually a big wait as he is only at my local hospital once a week, and they put me on the top of the list if there was any cancelations.
Once I got home, I had to make the embarrassing phone call, and wasn’t sure when it happened, but noticed I had wet myself. I am assuming it was during my episode. A) I had been to the neurologist office with tinkle in my pants. B) I did the right yet totally embarrassing thing and called Dr S’s, to let them know I might have pissed their cushion. I didn’t want to be an asshole and have someone sit in it. Oy vey. I was told no worries, but that really isn’t a call anyone wants to make.
It has been a few days and I am still recovering from whatever the heck happened. I am so exhausted and my body is really weak.
I have put a lot of thought into it, and I am going to do one more round of Dr J’s protocol. I was debating on taking the rest of this month off of treatment, I am not sure if that is what I need though. I might need to be on treatment earlier. Maybe wait it out? This can all be really confusing. Decisions, decisions.
Wishing you all a good Sunday!
Once again, P.S. Miss Olive and the “gang”. This is the first time I have gotten all these meatheads in one picture together. A whole bunch of cuteness right there. 🙂