Neurofeedback and stuff

**UPDATE**

I was very grateful to try the neurofeedback machine! In some ways the timing of receiving the machine was great. The holidays are especially crazy for me, but in November I had a MS relapse. I was a bit of a mess and turned holiday hermit. So, since I couldn't do many holiday things anyway, I figured it was great timing to sit back and focus on stress management. It did help calm me and develop better stress management. But, my geniculate neuralgia (feeling like an ice pick is being shoved down my ear) was greatly agitated. For anyone else it would be no problem. If you can wear a hat that covers your ears, brush your hair near your ear, put earbuds or a Q-tip in your ear, wear ear muffs, or even handle touching your ear at any time of the day, then this would no problem. For me, though, it caused too much pain and then the next few days my stabbing pains, ripping out jaw, electrocuted pains intensified. I thought I would be okay because I have reached the point where I can somewhat handle my hair touching my ear and the pain from brushing my hair only sends mild to moderate pain through my head, ear, and face. But, alas, the simple clip was too much for me. Again, it would NOT be painful to 99.99998% of the population (GN is extremely rare and there aren't many stats at all as to how many people have it, but it's extremely, extremely rare). I did, however, get through my MS relapse and my cognition, balance, and strength are better again. I feel like even though it was painful and I didn't get to use it as much as I wanted to, it helped me through my relapse.  Cognition was one of my biggest frustrations with my latest relapse and I'm particularly glad that it has basically returned. (January 7, 2018)

11/27/17

The best things for my TN/ON/GN/AD are hands down my anti-seizure medications. However, the multiple meds are taking parts of my brain too (well, that and my MS brain lesions). My memory is flitting away in pieces (especially with reversals, as if I have dyslexia at times, or I struggle coming up with the simplest words or names. There are other more severe episodes, but it's not as frequent). I graduated with a 4.0 GPA in my Master's program and now there are times when I can't remember words I taught my 4th graders. It's frustrating but not taking all of me.

They say we only use 10% of our brain.** So, sure, I may be operating on 9% of my brain...well, let's say 9.4% of my brain...and still functioning pretty well. I mean, if I were an 80 year old, you'd say, "WOW! That Kali is really rockin' that busted up body." So, yeah, MS can take 0.6% of my brain, but I'll make it up in different ways. Take that MS. =)

**Okay, so..."they" say/said back in the day that we only use 10% of our brain. I don't think it's entirely true, but let's just pretend that in an eternal/resurrected body sense we are only using a portion of our potential. 

...focus. Did I mention I have a hard time focusing sometimes too?

I've noticed a few new things that seem to indicate that I am either in active demyelination or I'm just having a bit of a flare of old lesions. I've actually had minor issues for a few months, but when you have so many diseases, you often brush warning signs off. Or dodge the red flags like you would a charging bull. It's been long enough, though, that I finally contacted my neurologist. I have a MRI scheduled, but I haven't had one since my little surgery. I've had many over the years and they don't bother me too much. However, I know how it is and the tiniest triggers for my anesthesia dolorosa/trigeminal/occipital/geniculate neuralgias could make the appointment difficult. First, you lie down while someone stands OVER you. It's usually cold and there are florescent lights overhead. They put this cage over your head and adjust sponge type things next to your head/face so you don't move. You are pushed back through a tube where you can not move except for small movements, which you shouldn't do anyway. Then there are loud pounding sounds. Over and over. Next, they pull you out and someone again stands OVER you while they INJECT the contrasting dye. Then you do it all over again. PTSD triggers all over like a swarm of bees with jack hammers for stingers aimed at my head (accompanied with acid, knives, electricity, burning rods, and scorpions I know will be there too). Issues. There will be a tiny little mirror and a hand held button to push to notify the radiology technician that I can't go on. May I stay in that claustrophobic tube for the whole hour (+) without vomiting.

So, I'm focusing on stress relief and better pain management. I'm cutting out Facebook (gulp), going to bed at 10:30 every night, cleaning up my diet, and trying NEUROFEEDBACK. (Check out neurofeedbacktraining.com).

I may extend my Facebook hiatus past the date of my MRI, but we will see. I stayed on longer than I anticipated because I was doing two challenges via fb. One was a weight loss challenge and I WON!!! I lost 4.9% of my weight in 4 weeks. It was exactly the motivation I needed and the positivity I could focus on. There are so many wonderful, positive influences in my life and I primarily communicate with them online. But, I am going to have to hide away in my little hermit hole for a minute or two. Hopefully a few people will still communicate with me via text, email, snail mail, or even messenger. If not, I'll see ya when I "see" ya.

Happy Holidays and I hope everyone feels less stress somehow for the remainder of 2017.