Thursday, May 4, 2017

I have a new SUPER POWER!

I don't mean to brag or anything, but I have a new super power. You know how super heroes often gain their powers through a freak accident? Yeah, that's pretty much me.

What is my magnificent power, you ask??

-->I can tell time withOUT a watch or being outside!<--

Okay, so I can only tell time with 6 pm and 9 pm., but I can still tell you when 6 or 9 are near. I could be in a movie theater or a bunker and every single day I could tell you when it's getting close to 6 or 9 p.m.

Bam.

Mind blown? (haha-pun intended)

I mean, don't be jealous or anything, but it's a new thing I can do. My husband says if he ever becomes a super hero his special gift will be that he can see the color orange REALLY well. I mean, all shades of orange with exquisite clarity. Pretty sure we'd be a powerhouse couple. Not quite sure which villain we could conquer but I'm almost positive it will be epic. ish.

It's been 15 weeks since my failed little brain surgery. You know how you start counting babies' lives in days, then weeks, then months...and then years? I'm still at the counting-by-weeks stage of counting the successes and changes, but I'm close to counting by months. I'm continually learning new limitations and every time I think I've figured out the right medication, sleep, talking, outside time, & rest schedules, I get hit with a whammy of a day and have to re-evaluate. With MS I had to do this a lot, but there are a lot more components this time. I may do well with 10 hours of sleep, smile only 5 times, talk 10 minutes spaced through the day, scratch my itchy face 3 times, space out when I shower and brush my teeth, take my meds 6 times a day on the dot, but get up and down too much and pay for it dearly.

But, I'm learning and repeat constantly, turn pain into POWER.

Here are the things that are changing/improving (as long as I don't do too much, make sure to sleep enough, and stay up on my anti seizure meds):


  • I have minimal pains in the morning until 10 a.m. Depending on what I did the day (or 3 days before), I can even have minimal pains until 11 a.m. Sleep is a huge deal. 
  • I still have that spot by my right temple that gets super cold whenever I drink or eat something cold, even mildly cold. Sometimes I do it just to remind myself that it's healing. It may be healing in a very odd way, but it's changing.
  • I still always feel like I need root canals on 8-10 of my teeth, have a horrible ear infection, always need to 'pop' my right ear, sensation of bugs crawling under my skin, and am in an unquenchable fire with knives and electric bolts...but I'm not as bad until about 5 pm. The intensity is usually bearable, depending on what I've done. I actually feel like I can live this way until evening time hits. Then this Cinderella turns into a pumpkin. Stroke o' 6!
  • My thyroid was the most inflamed it's ever been and had attached to surrounding tissues. Thankfully my nodules (growths) have stabilized some. ...so, I don't have to have another biopsy for now. =) WHOOP. WHOOP! Swallowing and pain are still an issue, but it's improving some.
  • I can talk some at night now. FOR REALS. I still have to be super careful and if I talked too much in the day, then I can't much. My husband and daughter have learned some sign language and we use my notebook less. 
  • I have been able to drive to some appointments on my own. Bless this weather and modern medicine. (And your prayers)
  • My pains get quite bad around 6 and 9 and I can't seem to get my anti seizure meds strong enough or early enough to stop it before it's bad. But, I can live with it. We are now at the point (between my neurosurgeon, 2 neurologists, and I) where we are staying at the doses of all medications. My neurosurgeon also went into more detail of just how RARE it is that I have anesthesia dolorosa after this particular surgery. The 0.8% AD, I mentioned before, is usually with the surgeries where they completely kill the nerve. Go figure my body is THAT sensitive and RARE. He didn't have figures on how many actually develop AD with radio frequency lesioning of the TN, but I'm the first he's ever known. I feel like I should have earned a sticker or a sucker for my good behavior and survival, but instead he walked out with my old CBD spray bottle. =) He has recommended CBD to several, but I'm the first to follow through and experiment with various brands and types. So he was really grateful to have my information and recommendations. 


I think the BIGGEST improvement or 'blessing' of anesthesia dolorosa is that I am learning what works and what doesn't. I'm learning even more than ever before what my body needs and my motivation has never been higher to do what is best for my body. Before there were so many factors that came into play when I tried something new. (Medication, alternative approach, schedule, positive thinking, etc). It's easier for someone to say they cured MS, headaches/migraines, fatigue, weakness, colds, pain, etc. with this or that. Double blind studies on lifestyle changes aren't found too often for a variety of reasons. Many people shout claims of cures purely on anecdotal evidence, especially when it comes to my various diseases. But, I can tell you if something works or not based on how bad the electric jolts buckle my body in half.

I have found these things help the absolute most (physically speaking and in this order):

  1. Anti seizure medications
  2. Priesthood and Prayers
  3. CBD (spray with peppermint)
  4. Massages, chiropractor, and other stress reducing practices
  5. Counseling/Meditation/Tapping/Alternative stuff
I am not to the point of saying I'm GRATEFUL for anesthesia dolorosa and Occipital and Trigeminal neuralgia. NOT YET. BUT, I am grateful for what it's teaching me. I am putting my health as top priority and doing all I can to make the pains lessen. EVERYTHING!!! Before when I just had my 7 diseases (MS specifically), if I got less sleep, was up and down too much, or got too hot, I'd pay for it. But, it wasn't earth shattering every day. I would get extreme fatigue, nausea, dizziness, loss of vision, hearing, diarrhea, and weakness, but I had learned to deal with that. My health was a priority, but not top. I have always tried to push myself past the point of exhaustion. Now I'm so desperate that I have so little desire to do things that aren't great for my body. If I get too little sleep, I pay for it so severely that I commit to not let that happen again. I used to worry about everyone else's comfort before my own-even strangers. Now I'm learning to do what is best for me apologetically. I guess if you want a cure for being a people pleaser, I found a solution. Step one-wake up in the middle of a minimally invasive brain surgery; #2-get your brain to not understand numbness and lesions in the nerves. #3-you might be cured. haha. OR just learn from me that while you shouldn't toss your kids and hubs to the wayside, you should put your health as a priority. Especially before you get to a point of no return. 

ONE day 
OR 
DAY one

You decide.