I’m just beat or, as my good friend says, I’m knackered. We had a long long day. My daughter was dancing at the festival of trees. So we had to wake up much earlier than I’m used to (it didn’t help that I went to bed way too late last night. And, yes I know that was my fault. I have this bizarre disorder where, regardless of how much time I have, I am almost always late. I drive myself crazy! Well, actually, I drive my family, my hubby the most,mcrazy too! I lack time-management skills…but, back when I was working, I was rarely late. I know it’s disrespectful, especially for appointments. I really don’t do it intentionally!! I feel like I look at my watch and it feels like maybe 10 minutes have passed, but actually it’ll be 30 minutes later. Strangely, I have never been late when I have to get my daughter to a dance competition…weird.)

Well, did I ever get off topic – lol. My daughter’s new dance studio has an extra group that you can choose to sign your child up for. They call it the “Elite Team” and the cool thing is, they give the dancers extra opportunities to perform, prior to the competition season. This gives the dancers experience dancing in front of an audience, without worrying about the judging and everything else that goes with competing. It should help with their confidence, so they feel ready to perform when they are in competitions. She did really well and had lots of fun. Also, our son had a lot of fun at the festival of trees. They have so many activities for kids and he really enjoyed himself. You purchase tickets and then choose which activities you want to do, each worth a certain number of tickets (it all goes to the University Hospital Foundation). He decorated a gingerbread man, got a “festive tatto”, decorated a mini-tree (he was so excited that he got to keep it!!) they had a hockey net set up where you get 3 shots and get a prize, and he sent a letter to Santa. There were lots of things to do. It was really nice. Afterwards, our daughter had her regular dance class, so we went x-mas shopping while she danced. Then we had other running around to do. It was a good, fun day. I kept my face complaints to myself, but I’m done in and off to bed! 

To help with research and treatment for Trigeminal Neuralgia please go to http://www.tnnme.com (Trigeminal Neuralgia and Me) to sign a petition to have the World Health Organization (WHO) add Trigeminal Neuralgia (TN) to their “Health topic list.”

Hopefully once day I’ll get it right, or at least have fun, while about it I write!!

So I can barely function right now. Literally!! I am so so tired that my eyes are not staying open. I don’t think I will be able to write much at all. I keep falling asleep. I need to take advantage of it and actually go to bed!! Once I almost dropped the iPad. I had a really really busy day! It was just go go go all day, with hardly any breaks in between things, until past suppertime. I saw my pain doctor and he changed my medication again. Also, he upped the oxycodone so that, hopefully, it may help. He’s very very good! He is super nice, easy talk to, and he actually seems like he cares. Also, he doesn’t judge you, consequently I don’t feel like what I say to him is wrong or bad. As a result, I tend to feel more free talking to him about things and saying things that I might hesitate to say to other docs. Many doctors make you feel uncomfortable, like you’re seeking out pain medication just to get high. Dr Hauptman’s goal is to make me pain-free. Once we get there, I rejoice. Then, from that point, we can slowly back off some of the meds and see which ones help and which don’t. The first goal is to make me pain-free. And I have to admit I agree with him, pain-free sounds great to me! Also, starting next week, on Tuesday or Wednesday, I get my first shipment of medical marijuana to try. I’m super nervous because of the whole legal illegal debate thing…But, for now, I’m off to bed. 

To help with research and treatment for Trigeminal Neuralgia please go to http://www.tnnme.com (Trigeminal Neuralgia and Me) to sign a petition to have the World Health Organization (WHO) add Trigeminal Neuralgia (TN) to their “Health topic list.”

Hopefully once day I’ll get it right, or at least have fun, while about it I write!!

Eye may have a new fun thing to deal with for a couple weeks. My eyes have been sore and bothering me. Both eyes have felt dry and almost gritty and, just irritated,especially the left eye. So, I went to the doctor today and she thinks that I might have something called Episcleritis. She’s not 100% sure. She told me to make sure I see an eye doc tomorrow. I’ve never heard of it, but the name was a bit scary! However, from what I’ve been reading, it’s actually pretty common and not severe or scary. If it progressed into Scleritis, it would be worse. So, since I’m super tired and, my eyes are both wanting to stop looking at an iPad and just close…I took some pictures and mine aren’t that bad at all (compared to the nasty eye problems that I’ll never be able to erase from my corneas on google images – I just shivered a little there!) As a was saying, I have copy and pasted an information sheet from http://www.eyecaretrust.org.uk.  
First, my lovely eye pictures 👀
This is my left eye👁, that is bothering me the most:

  
This is my right eye 👁 (forgive me for the blurry picture, I can’t seem to get a better one and I’m exhausted, so I stopped trying):

This is…you guessed it, both of my eyes 👀! (I’m so so proud of my smart readers!! Good guessing‼LOL):

This is a diagram 

that I found online:

  
And, finally, Here’s the information (who knows, I may go to the eye doc tomorrow and have them say, they’re just strained or something simple… Well, if so, I am now full of information about Episcleritis – lol)

Thank you, http://www.eyecaretrust.org.uk much much appreciated!!
To help with research and treatment for Trigeminal Neuralgia please go to http://www.tnnme.com (Trigeminal Neuralgia and Me) to sign a petition to have the World Health Organization (WHO) add Trigeminal Neuralgia (TN) to their “Health topic list.”

Hopefully once day I’ll get it right, or at least have fun, while about it I write!!

Unfortunately, I’m having one of my bad days today. I told my daughter that, when we enrolled her in a dance studio in the city, her dad and I would do everything in our power to ensure that she doesn’t miss any classes. However, today, on top of my stupid face, I woke up this morning feeling just awful. I have had a high fever all day and I can hardly move because my skin hurts so so much! My clothes hurt my skin, writing this hurts my hands…yuck! That’s the joy of fibromyalgia. I almost fainted in Sobeys and am seeing stars, literally! My tummy is cramping and jabbing. My problem is that my daughter had to dance from 6:15 – 8:00 & my hubby is out of town & my mom & dad are at their BC house 😒. I drove home from dropping my son off at Kindergarten while feeling like I was going to pass out, again, or throw up, blech! I knew that I shouldn’t drive to the city feeling like that. It just wouldn’t be safe. My hubby said that if I can’t find anyone to drive her, I could call a taxi and have our 18 year old big sister go with her (it’d probably cost a lot, but she really really doesn’t want to miss any of her classes this year.)

I went on a hunt for someone to drive her to and from dance. One of my closest friends in Beaumont drove her there and another friend, who lives in the city and works with my hubby, is picking her up and dropped her off. So, this post is to say Thank you Thank you Thank you!!! I’m not sure if they want their names on here, so I left them out. But I am so so lucky to have friends around to give me a hand. I appreciate it so so much! My daughter is really enjoying dancing at the new studio. YAY!!! No more coming home crying!! YAY!!!

Now I’m going to throw up…pleasant, I know!! Then I’m going to lie down to see if it helps. 

Thanx again!

 To help with research and treatment for Trigeminal Neuralgia please go to http://www.tnnme.com (Trigeminal Neuralgia and Me) to sign a petition to have the World Health Organization (WHO) add Trigeminal Neuralgia (TN) to their “Health topic list.”

Hopefully once day I’ll get it right, or at least have fun, while about it I write!!

Why must everything take so long?? I feel like there’s never enough time to get everything that I want to do done. And, of course, the days when there is a great deal to do are almost always the bad pain days. (That’s one of those fun Murphy’s law situations!) 

So hear I sit, it’s late yet again.

There’s so much to do, the list doesn’t end. 

So I’m up far too late, trying to do it all. 

Then I feel so tired, like I’m about to fall.  

I want to push through and get everything done.

But when the first things get done, there’s another one!

Then I go to bed tired and shaking with pain.

And I lie there at nights wondering if I’m going insane!

If you walk through my house, it’d look like nothing gets done.

Even on the days of work and no fun. 

Then I collapse into bed exhausted as can be.

Then I wake up and do it all over, lucky me…

To help with research and treatment for Trigeminal Neuralgia please go to http://www.tnnme.com (Trigeminal Neuralgia and Me) to sign a petition to have the World Health Organization (WHO) add Trigeminal Neuralgia (TN) to their “Health topic list.”

Hopefully once day I’ll get it right, or at least have fun, while about it I write!!

Moving flowing, running smooth.

No bumps or nicks to interfere. 

Getting closer. Sensing the end.

Can hardly believe it’s almost here. 

Fear and excitement becoming one

A clear direction building inside.

A fresh start, another chance.

Ready to hop on and enjoy the ride!

JKC

I forgot all about my picture of the day. Oops!! 

So, here’s today’s silly kiddos! Don’t know how she managed to get his baby hat on, but they did!! ❌😘❌‼️

  
To help with research and treatment for Trigeminal Neuralgia please go to http://www.tnnme.com (Trigeminal Neuralgia and Me) to sign a petition to have the World Health Organization (WHO) add Trigeminal Neuralgia (TN) to their “Health topic list.”

Hopefully once day I’ll get it right, or at least have fun, while about it I write!!

Do you ever feel you’re younger when you’re talking in your head?

Do you wonder where those days went and how time has jumped ahead?

Inside I’m so much younger than what I see in the mirror. 

I see my son and teenaged daughters and remember why I’m here. 

Regrets are really challenges that remind me there’s still time,

To chase my dreams, to play and love, to find another mountain I can climb…

JKC

To help with research and treatment for Trigeminal Neuralgia please go to http://www.tnnme.com (Trigeminal Neuralgia and Me) to sign a petition to have the World Health Organization (WHO) add Trigeminal Neuralgia (TN) to their “Health topic list.”

Hopefully once day I’ll get it right, or at least have fun, while about it I write!!

Had a pretty quiet day today. Didn’t do much at all, but it was nice. I woke up in a really good mood, which is very strange for me. I’ve never been a morning person, but I used to at least get my butt out of bed at a semi-early time (regardless of whether or not I was happy about it!) My little man and I played with dominos and we played some games together on the iPad (those addictive simple ones that you play again and again trying to beat your high score.) My girls didn’t have any of their over-the-top arguments about every little thing you could think of usually stupid little things that most people would shrug off. I don’t remember having as many arguments with my sister; I do remember her being mad a lot because I would wear her clothes without asking her (which my youngest daughter now does with Taylor’s clothes – lol) I’m not saying everything was always sunshine and rainbows, but our disagreements didn’t seem half as bad as my girls arguments (I may be wrong and remember it differently, my parents likely have a whole different perspective – lol) Anyway, today was a good day. From about 4:00 on my face got super bad and it hasn’t stopped since, but that’s not exactly big news is it. I’d rather be announcing that I had a pain-free day than saying my face was on fire, again, flaring red, again, stabbing me with an ice-pick, again… Well, you get the picture I’m sure. My goal for today was to get to bed at a better time. I need to change my schedule and stop going to bed so so late. Actually, I need to change my son’s schedule too. I think I tend to stay up late because he’s up too late. I want some quiet time, to just read or write or do nothing, just quiet time. So, consequently, the later he goes to bed, the later I do. And, with all of this in mind, I’m off to bed right now!! 

To help with research and treatment for Trigeminal Neuralgia please go to http://www.tnnme.com (Trigeminal Neuralgia and Me) to sign a petition to have the World Health Organization (WHO) add Trigeminal Neuralgia (TN) to their “Health topic list.”

Hopefully once day I’ll get it right, or at least have fun, while about it I write!!

Well look at me. I actually woke up at 8:00 and stayed up!! Pretty exciting news…(doesn’t take much folks, doesn’t take much…) 

I was about to head to bed when I realized that I hadn’t written my post yet today. Yikes‼️ I would have been so angry with myself. I’m so close to the end of the year that missing a post now would really have upset me. However, it won’t be much of a post because I feel exhausted and the pain is over the top today. My face is doing the strange red flare up thing. It’s on fire and looks like it. I don’t know why it sometimes has this strange red flush accross my cheek and other times it doesn’t. All I know is this stupid pain patch that I have on might as well be a bandaid!! It’s doing nothing for me, other than leaving a bunch of that sticky gluey gunk on my skin that takes forever to get off. It brings back that painful moment when the crabby nurse in the NICU yanked the bandage off the back of my head without warning!! (Seriously, she was so so mean!! I was sitting up on my bed talking with my neurosurgeon and she was doing something beside me. Suddenly I felt her hand on my head and she ripped the bandage, along with some hair, off,‼️ No warning at all!) I had such a horrible experience there. Prior to my surgery we had heard so many positive things about the NCIU, but I had just an awful experience! I’m not going to bash  them or say anything else about it on here, it was just my personal experience. 

How in the world did I ever end up talking about this?? Strange. Well, I’m going to stop while I’m ahead. 💤💤

To help with research and treatment for Trigeminal Neuralgia please go to http://www.tnnme.com (Trigeminal Neuralgia and Me) to sign a petition to have the World Health Organization (WHO) add Trigeminal Neuralgia (TN) to their “Health topic list.”

Hopefully once day I’ll get it right, or at least have fun, while about it I write!!

I’m feeling a bit better today (emotionally I mean, my face hurts like a “bleep”!!) I have this irritating urge to apologize for yesterday’s post. It’s irritating because people (the vast majority being women) have been apologizing for having depression for years and years. And, despite the influx of education and information about depression, it still carries a huge stigma with it. For the most part, those who haven’t personally battled depression or had anyone in their lives with the disease, people just don’t understand it. It is not just having a bad day or two. It is not just feeling sad, it is not something you can “just snap out of it”, it is not a personal choice, it is not just being lazy nor is it all for attention. Well, it “is not” many ,any things. I’ve been told that instead of taking antidepressants, just go for a run, because your natural endorphins will help you feel better. Seriously! Yes, I will get right to it…some people with depression have a good day if they’ve gotten out of bed and onto the couch. (Oh right, that’s just plain laziness!!) I have friends and family who have won the battle with depression and some who are still ingulfed in it. It is a disease not just an overly emotional person or drama queen or…(fill in the blank here, because, sadly, I’m sure you’ve heard of the many many other things that are said regarding depression.) Studies examining the brains of people who have died with depression show that, when you compare the brain of a healthy person to the brain of a person with depression that there are vast biochemical differences of those with depression. 

So, although I have the urge to apologize about yesterday’s post, I won’t! (Which is huge for me because I’m one of those people who apologize about everything!!) I am depressed. I am not going to be depressed for the rest of my life, but currently I’m swimming in those murky waters and it sucks! Part of the reason I began writing this blog is to find myself in the muck. It is a long journey and I have shared a great deal about my personal and very emotional struggles. I’m certain that I’ll find my way out of the muck, but not over night. This blog is helpful to me. It makes me believe that I will find myself and I will find my way through it, to come out the side new and improved!! This is a difficult journey and I know that my honest posts are often difficult for my family and friends to read (I will not be offended if you choose not to read my posts, because they are too difficult emotionally for you to hear.) However, again, I will not apologize for writing what I write. It is cathartic and despite my post upsetting and worrying people, it is helping me. It’s one of the things that I still actually do and feel good about. I mean I’m almost into December, which means there is one month to go and then I will have kicked some butt and completed my personal challenge!! Yay me!!

To help with research and treatment for Trigeminal Neuralgia please go to http://www.tnnme.com (Trigeminal Neuralgia and Me) to sign a petition to have the World Health Organization (WHO) add Trigeminal Neuralgia (TN) to their “Health topic list.

Hopefully once day I’ll get it right, or at least have fun, while about it I write!!

Photo of the day: