I feel like I am getting sick. The back of my throat just feels like “ick”!

My brain is pounding in my head. I think I need to go to bed!

My eyes are red and really dry. My mood’s darker than the night sky.

I think I may have done too much. My face is too sore for even me to touch!

I hate it when it gets this bad. It just makes me so bleeping mad!

Some days I really want to scream.  It’s so much worse then anyone could dream!

So instead of complaining to you on here, or watching my husband drink a beer.

I’m going to lie down in my bed. And rest my pain-filled face and head‼️

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

Our poor little girl. She just gets so so scared when she’s in the bath. I’m not sure why. Maybe something happened when she was little…well, she’s still little now, obviously (that’s my daughter’s hand on her back, so you can see how little she is). I just meant before she was found (all alone, in a back alley in down town Edmonton, the size of a grapefruit, all matted and dirty and starving and scared🐶🙍🏼😓). I just wonder if she was thrown into a bath or, even worse, held down in one. (I know, way to jump to the worst case scenario…!) I suspect that something bad happened to her because she gets really scared. Really really scared!!! The first time we gave her a bath, at my mom’s house, she was so so scared, she  practically clawed herself all the way up my daughter, in an attempt to escape. She was crying and shaking and whimpering. The poor little girl. Needless to say, that wasn’t a very long bath!! She had been playing in the sand at the beach that afternoon and she really needed to get cleaned. Especially because she often sleeps on the bed! We did our best, but once we saw how scared she was we didn’t make her to stay in the bath for long. So, she still isn’t a fan of baths (as you can see in the photo) but she’s getting better. She doesn’t cry for the whole time anymore. She still shakes and does a horribly sad, quiet little whimpering, but it’s gotten a bit better. Baby steps, right??

P.S. Yesterday at Mulhurst Bookstore I said that the owners of the store know my mom’s friend Kathy, I was thinking of the wrong Kathy. The one that they were talking about is a very kind lady, who, indeed my mom knows. She is an Anglican priest, as is my mom. She and my mom did the baptismal service for my little man. She has since retired.  My mom also is very close to another Kathy, who does amazing fabric art. I mean amazing!! She is so very talented. I know she has a website, but I can’t think of it right now. I’ll ask my mom, then let post it.

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

Had a good day. Carol told us about a neat, gently-used bookstore in Mulhurst (it’s called Mulhurst Bookstore). Taylor and I went together to check it out. It was owned by a nice couple probably about my parents age. Well, no, they probably a bit younger. They were very kind and helpful. They went out of their way to try to track down a couple books for me. They made a fresh cup of Starbucks coffee for me (which I love. They also have pie. I was just into the books & small gifts though). The store itself used to be a church and it is very beautiful and the feeling as soon as I entered was very calming and soothing. I’m a book freak and so is my Tay Tay, so I could easily spend hours in a store like that!  After chatting, they ask me if I’m Carhy’s (not saying the last name) daughter and I said “No, but she’s my mom’s best friend!!” Such a small small world we live in! So, needless to say, I spent too much money!! But it was nice, no regrets!! We arrived at 4:00 and left just after 5:00 (they closed as we left – lol). I’m very glad that we went. I had a high pain day and wasn’t going to go, but I forced myself and I’m proud of myself for going anyway!! Check it out if you’re ever in or around pigeon lake!! (www.mulhurstbaybooks.com)

And now my pain is so bad that I have tears in my eyes. This crazy on and off again service is super annoying!!! I need drugs to try to douse some of this pain! Night all!

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

Well, here we go again, for the very last time 😥😪… I’m trying to write my post from the cabin. It’s funny how much we take for granted, like wifi for instance. I turn my iPad on and write my post and, huh it’s not saving. Nope! No it’s not! Well, Jenn, you don’t have wifi at the cabin!! So it doesn’t matter what I may have written and was ready to post, because, guess what??? I can’t post anything off of the iPad until I go home!! The dumb thing won’t even save to my iPad! I mean I get why I can’t upload it, but I can’t even save the damn thing to my iPad! Weird. Talk about frustrating! Also, a big big waste of time and effort. And now?? Now I don’t feel like writing something else and it is 10:45 and I am tired and I am in pain and my heart is hurting knowing that we are never going to be able to come back out here ever again. Ever. Period.

So I am going to bed. Goodnight.

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

Well, today is a bit of a sad day for us. We have had the privilege of using a friend’s cabin on Pigeon Lake whenever we want to for many years now. They own two cabins, the second one that they purchased when their grandchildren were young. Once their grandkids grew up, it started to just sit empty and unused, so the most generous woman on the planet and her sweet, kind husband, Carol and Rae Allen, offered the cabin to us, to use practically whenever we wanted! We’ve probably been going since our 18 year old was about 6… The cabin is on a huge double lot with so much wonderful space to run around and play. We taught all of our kids badminton there.  We’ve had hours long croquet games. We’ve had long, fun filled nights sitting inside at the beautiful huge table playing board games and cards. We have had long long nights by the fire eating s’mores and singing silly camp songs and watching the bats swoop and dive around us. As their other lot is a lake front lot, we also had easy access to the lake (& their kayak and beach toys) whenever we’ve wanted. We have made so many precious memories at the cabin. Memories to last a lifetime. Carol and Rae gave us such a blessing and we are ever so thankful to them. The two cabins, both on double lots, are a lot of work to take care of. Rae has always reminded me of my father, he doesn’t sit and put his feet up until all the work is finished, even if he should!! Their children are concerned with the amount of work that is required for the upkeep and maintenance that Rae is required to do. They are both in their 80’s and it has slowly become too much. Their kids have been urging them to sell the second cabin for some time. Rae told my hubby the price he’d charge us if we wanted to buy it from them. However, with only one income, it just isn’t realistic for us to buy it. So, Carol called us today and told us that the cabin has been sold. We’d already planned on heading out there for the long weekend. Now we know that it’ll be our last time. It fills my eyes with tears and my heart feels heavy (& my lower lip has been a bit shaky all day), but I completely understand why it had to be done. When I picked my daughter up from school today and told her that it’s been sold, she instantly had tears in her eyes. Oh, I feel her pain!

Thank you Carol and Rae Allen, thank you. You’ll never know how much we appreciate you😘

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

This is how I feel some days! When we’re all goofing around and laughing and just being silly. My girls and I having long talks about things that I did when I was young. Mistakes or silly things I did. They tell their stories about something at school or with their friends. We can look at a clock and realize that an hour or two passed and we didn’t even notice.  We’ll be like “okay, we’re going to bed.”  And then an hour and a half later we see the time, then we’re like “Oh no! You have school tomorrow, it’s so late!!” It is so beautiful and I’m blessed to have such charismatic, beautiful, smart, funny and silly girls. I love watching them grow up and it is so amazing to be able to talk to them about everyday things. No longer having the little kid thing going on. They have so much knowledge and different thoughts and opinions. I am just very very blessed. 🙋🏼👩‍❤️‍👩

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

Today was crazy crazy busy for me. I had to take my son to kindergarten this morning. (Hence the Thomas The Train reference) I planned on writing this while he was at school, once I dropped him off.  but However, we had to stay the whole time. Feels right though, as my brain’s so fuzzy it’s likely fairly close to a Kindergarten level! Lol❕After kindergarten, I had a meeting at the outreach school with my oldest daughter, it took over 2 hours, close to 3 hours actually!! It was time well spent! It just went really well. Coming out of the school she looked like a weight had been taken off her shoulders. It was very nice to see!! After her meeting, I also had to get our middle daughter from school, along with 3 of her friends and dropped off at Starbucks. Finally, I still had to drive to St Albert for a special prescription I’m only able to get there, because it’s a pharmacist who my pain Dr trusts and she makes the gel stuff and has many years doing these type of meds. But St. Albert certainly isn’t close and the meds expire 2 weeks after being made!! So, I’m going to have to get used to driving there a lot! I, obviously, was kind of swamped all day!! Consequently, I’m so so tired now. Just almost forgot to write this – that’s how tired I am!! That is why I am writing this so late! And now, I am signing off and going to bed.

And, just for a laugh:

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

What a strange night…the power is out all through Beaumont – the entire town and a great deal of the surrounding area in Leduc county as well. Consequently, this is going to be annoying. I’ll either have to switch to my phone, because obviously no power equals no wifi! Or I’m able to write on the app on my iPad, however I won’t be able to actually upload this post until the power is back on (I have no idea how long that will take!!). Of course this happens on the night before my middle daughter’s first day of grade 8 and my son’s first day of kindergarten.

And, for the record, I can hardly believe he is starting kindergarten (and part of me doesn’t want to believe it at all!!) We were cuddling the other day and I squeezed him tight, kissed his little head and said “Oh I love you my baby”. He pulled back, to obtain eye contact and said “Mom, I’m not a baby anymore, I’m a kid!!” And, yes thanks for asking, I’m still finding missing pieces of my heart scattered about… (did I already write about this?? I’m feeling a déjà-vu moment writing about this!)

Also, last week he lost his first two teeth. The bottom middle ones were just so so loose! Crazy loose, just seemed to be hanging on by a thread! Finally, the first came out last Monday night and the next followed on Wednesday.

BEFORE: (note, all the teeth are present)

 

IMMEDIATELY AFTER: (no explanation necessary)

AFTER: (two days later, the second one came out!)

And that’s my baby. Oh, wait wait, I’m wrong! It’s my “kid” lol!!

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

A gap inside where there once was a spark

A crease on my forehead where once it was smooth

A flat look in my eyes where once shone a light

A drag in my step where there once was a bounce

A negative view where once it was bright

A rush of harsh words where once they were kind

A life without energy where it once overflowed

A hunger for meaning which never will die

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

Today felt long and drawn out. I’ve had a mother of a headache all day. The new migraine, nasal spray did nothing for the pain and the new pain med did nothing either. I didn’t have high hopes, why would anything work at all?? I have a pretty long history of resistance to medication. The pain Dr doesn’t know my history like my regular doc. The last time I saw him and he gave me a new prescription my regular doc raised the strength without discussion! She’s been my Dr since I was about 22, so she knows me well. Anytime I’ve had a different Dr or specialist they just don’t listen to me at all when I try to tell them that I’m very resistant to medications. I’ve had numerous instances where they didn’t listen to me (I believe that they think I just want the buzz) and find out (usually after they actually witness it themselves) that I’m still in a great deal of pain. So, I guess I have to play that game again with this pain Dr. Even when I had my brain surgery. My doc wrote a letter about my medication resistance and printed off a list of my meds and doses, etc, (in order to avoid a great deal of post surgical pain) and they completely ignored all of that information anyway.  It was so so bad… And round and round we go!

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