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!!

I saw my pain Dr this morning (far too early if you ask me!). Another new pain med to try, new migraine med to try and one other new med on my plate. So two gone three added. I still feel shitty the majority of the time. He talks about how the pain med is to be used for “break through pain”, which is supposed to be used as needed, not by rote. The other prescriptions are supposed to be keeping it mainly under control. The problem is that I’m not sure if they actually are fulfilling that role, because my pain seems pretty constant. I know I currently am in pain more often than not. But the solution to pain isn’t just prescriptions, it’s about choosing to live again, it’s your diet and lifestyle, and bla bla, yadda yadda yadda… (I always think that it’s easy to tell someone what they should be doing to get better, but for the most part you’re being told this by people who have no idea what it’s actually like feeling like shit almost all of the time!! And, frankly, it’s exhausting!!!) Here I am, it’s only 8:30 and I am lying on my bed writing this and then, hopefully, going to bed. We did the pizza and the cupcake (she made them all herself – by scratch!) and now I’m so so tired. I will likely miss presents (which isn’t a great thing to sleep through), but I feel so so dizzy and a fuzzy tingle feeling in my “extremities” (I do believe that is the first time I have ever used that word!!). And, my face is on fire. ♨️♨️ (this is as close to a fire emoji I can find..

Happy Birthday my sweet little one. I love you oh so very much!!

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!!

Short short short! This post will be short. Tomorrow will be super busy, I see the pain Dr at 8:30AM!! (Yes, it’s true! 8:30 AM – in St Albert on a Saturday!!!) Then, my hubby has a football game at 11:30. Also, and most importantly, my baby girl turns 13 tomorrow. Wow!! I don’t know how my babies can possibly be so much older…especially since I don’t look a day older than 20 …Ah, come on now…stop laughing!! My lovely, soon to be thirteen, daughter and I were taking our bottles, cans, ect. In at the bottle depot last week and the lady helping us asked if my daughter and I were sisters!!! She was dead serious! Lol. I truly thought she was just joking around, but she was dead serious!! I’ve been told many times that I look young. But sisters with my youngest daughter!!! Sheesh!!

❕❗️❕❗️ 1⃣3⃣❗️❕❗️❕ 💫💥🌟🌟HAPPY BIRTHDAY 🙆🏼🌟🌟💥💫

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!!

Hubby’s home. Yay! He likes traveling for work as much as I like him traveling…yep. Hate it!

I officially registered my daughter for dance today. So, it is done. Her first class is on September 12. She is feeling both excited and nervous about starting at a new studio. She’ll be 13 on Saturday, so it’s understandable to be nervous about meeting new kids. Especially if they all already know each other. It’s a brave step for her and not an easy one. She’s thought it through and decided it’s what she really wants. She will miss seeing her friends at dance, but that is it. She is not sorry to be leaving the studio or teachers, just her friends, who she can and does still see, regardless of dance. The new studio so far seems really good. Everyone is so welcoming and friendly. The head teacher told us about how they operate as a family, they are all encouraged to support each other and to be respectful and kind to all of the dancers. They do some fun events throughout the year, including a sleepover with all of the students. I’m feeling good about it. Now, we just have to figure out what’s going on this Saturday. Always something…

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!!