Today is bad. It makes me mad. I want to scream and pull my hair. I want to cry, but do not dare. I wish I knew when it would strike. Wish it wouldn’t come whenever it likes. It frustrates me so so much. I’m tired of worrying about every touch. I’m sorry about always seeming to complain. I’m sick and tired of all of this pain. Some days I’m just plain done. But a shitty day doesn’t mean the pain’s won. I’ll be back to fight another day. But for now goodnight’s what I’m going to say. 

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 day of dark circles under my eyes

A day of dark clouds outside in the skies

A day of sharp pain spearing my face

A day of sharp feelings I long to displace

A day of slow moving and going nowhere

A day of slow thinking and trying not to care

A day of harsh judgments of all I don’t do

A day of harsh realities that I’ll keep from you

A day of vast nothingness that finds no end

A day of vast cruelties that the pain will send

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 I had to get up at 6:00AM, which for me is a miracle!! Seriously! It is a very very rare occurrence indeed. My daughter had a dance competition in Red Deer today. She actually didn’t have to dance until 3:00, but some of her friends were on at an earlier time. I’m good friends with the mom as well. So, we were able to visit and watch some of the other dances. These kids are incredible! I don’t just mean my daughter’s dance school, but the majority of the dancers, in general. The talent that you see can blow your socks off. They make you laugh and cry and just feel their joy. I’ve never been a big “dance mom”, so it’s not like I’m super experienced or anything, but the caliber of dance as an art and a sport has gone through the roof!  I’ve watched “So You Think You Can Dance” with my daughter for years and even the judges on that show have commented on how the boundaries of talent and training and skill of the dancers is just getting higher and higher. I’m privelidged to get to watch this! I’m also very proud of my daughter. Her hip hop class received high gold today!!👏🏼👏🏼👏🏼 

 I’m going to run to bed now. It’s been a super long day and I’m wiped! I just want to take a second to say sorry for some of yesterday’s post. I went back and edited it.  I took out the things that I said that I should have kept to myself. I’ve been trying to keep my family’s names, etc out of my post and I messed that up yesterday. I find myself on hyper-alert these days! I suppose because I feel so bad about myself that even small comments from others can instantly get my back up. My self criticism has me at my worst and I find that any comment that somewhat confirms this opinion, hits too close to home and instantly puts me on the defensive. I use this blog to work through things, much as I’ve used journals. I write what I’m feeling in the moment. It’s generally not planned. I figure that I need to get out what I need to get out…if that makes sense. But,  I’m very sorry for spewing some inappropriate and hurtful things yesterday. I can say whatever I want about myself, but I shouldn’t do so about anyone else!! Very very sorry😔. 

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 to me. I’m still feeling pretty out of it. It’s not like I travelled from Europe or anywhere exotic or anything, but I still am done in! My mom 👵🏼 came over today. She wanted to help, in case I couldn’t get the difficult areas done with the home rental led light array thingy (yes, all very technical terms, especially the word thingy, I mean I made the Dr repeat that difficult and technical word, thingy, on many occasions, until it flowed naturally- thingy!! See, I can hardly control my enthusiasm about getting that term right!!)  My mom also brought groceries and made supper, I sure love my momma! She loves us very much and came to help. She knows how bad I get, she has seen those really bad bad days! When I stop caring about things!! I give in to everything, regarding my kids!! They have too much pop, eat poorly, watch too much TV or spend hours on-line. I know I’m too lenient on my kids. I know they stay up too late. I know they take advantage of me. I know many many sad and difficult things…I also know I’m not able to be the mom or even the person I was before. I know I’ve become a somewhat negligent mom. I know I often feel helpless and hopeless.I know I’m often unable to take care of my kids, as I should. My mom wants my pain to go away.  She loves me and wants the best for me and my family.  I love her dearly and had a wonderful trip with her. She is doing all she can to help me to become pain free and I appreciate it so so much!! Fortunately, I was able to do it all on my own, the light array thingy (which means I can do the treatment to myself without having to rely on someone to help me with the light array thingy everyday!). 

Of course, mom and I (👵🏼&👩🏼) also watched a couple episodes of Downton Abbey, while I had the lights on and she attempted to dive into our overflowing basket of mismatched socks, to find pairs. Very very brave indeed!! My hubby is ready to throw them all into the garbage and head to Costco or Walmart or somewhere to buy us all new ones. Many of the same colour and brand and style. Then, each person gets their one colour and then when the socks come out of the drier, they just get separated by colour and thrown into that person’s sock drawer. I mean, seriously, how many families would save time and effort by following this simple system? Maybe we could market it. And set up one of those kiosk type things in the mall. We could sell a rich range of colour and style options. Perhaps even have the names embroidered on the more pricey socks. We could even have a wide range of  fabric types from basic, cheap polyester to fuzzy fleece to cotton or even organic cotton or bamboo. This here shows proof of someone who has far too much time on their hands. Yes, I may have embellished my hubby’s idea somewhat (the last time when we were at Walmart he bought a huge package of 12 -cheap- black socks. All identical. He has found that finding matching socks before work much easier. However, he has come to accept that, as I said to him, they are cheap socks. Yet, his idea was sound though. Especially when he is responsible for laundry when I’m having a bad/hard week…as in my health. I could easily assign colours to the kids. Although kids socks are easier when they’re coloured and such. It just gets hard when half of your overflowing basket of clean socks are black or dark dark navy! And look at this…I just managed to write a huge random paragraph dedicated almost completely to socks!! On the bright side of things, sandal weather is here, or damn damn close!!! Then we won’t have to even think about socks!! 

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’m pretty certain that I am about to write another super short post tonight. I’m so tired today. I couldn’t keep my eyes open all day. They kept closing, seemingly of their own volition all day today. I kept doing that nodding off and jolting back up again thing all day! My little man kept laughing at me. Boy it was good to come home! I didn’t realize how much I missed my family until I saw them all. It sure felt much longer than a week. Time is such a strange thing. It didn’t feel long while we were there until maybe the last night. Mom and I were both feeling super tired by then. We missed our own beds & pillows. We missed being able to eat our own food. And mostly we missed our families! And now, on that note, I’m going to read to my son!

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!!

After 6 days in a row getting laser treatments for my stupid Trigeminal Neuralgia 💆🏼, I hurt my back getting out of the rental car 🚘 at the Toronto Airport ✈️‼️🙍🏼😰. Seriously, I wish I was kidding, but I’m not. Really…

This is about to be my shortest post ever. We board our flight in about 20 minutes. It leaves at about 10:00 (Toronto time) 🕙and we get home at midnight (Edmonton time) 🕛. However, it will feel like 2:00AM 🕑 to mom and I (👵🏼 & 👩🏼).  I can hardly move because of my current back pain and we’re about to sit on an airplane ✈️ for 4 hours. So, I’m pretty sure that I won’t be writing when we get home!! Night night 💤💤!!

Yep. Not adding much else…about to finally lie down, in my own bed – yay!! It’s now 2:30, Edmonton time, which is about 4:30, Toronto time, yikes! I’m too tired to think…

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 mom and I (👵🏼 &🙎🏼) finally did a bit of sight-seeing. [Okay, this has nothing to do with what I was about to say, but have you seen the newest IOS update? The emotions have been updated!! So, looks like there’s a new me 🙋🏼 complete with new expressions/poses – as you can see with the first emoticon I used to be me 🙎🏼!! Mom’s the same though👵🏼. Fun fun fun!!] Anyway, after my  appointment we drove to Port Credit (an odd name, right??).  We walked 👟by the  light house and by some neat shops and restaurants. It was a beautiful day ☀️and we went into a neat l👀king restaurant, with an upstairs patio, for lunch. There hasn’t been great weather since we’ve been here. Apparently we weren’t the only ones out taking advantage of the great weather. When we went inside they said that the patio was full and that there was a about a 40 minute ⏰wait (he was a bit rude about it – 👿). So, we sat inside instead. Well, we ordered a couple Strongbows 🍻 and put our food order in (nothing fancy, just a couple burgers 🍔) and our food took over an hour ⌛️to arrive!! Evidently we misunderstood Mr Rude-guy 👿. The 40 minute wait-time ⌚️was for the food, not to get a seat on the patio! Also, our waitress informed us that today was the first day of the year that their patio was open. It seemed that everyone who lived in the area had decided that they wanted to get outside and, from what we could see, this was not of the only patios opened! However, we were pleasantly surprised by how great the food was 🍴. Also, our waitress was quite sweet, just extremely busy and somewhat overwhelmed. The frustrating thing was that by the time we finished eating we weren’t left with much time to check out the neat shops 🌇. Not that I have much money 💵 to spend anyway. We were restrained by the time, because I had to get to a drug store before it closed. We ended up arriving too late to get my prescription 📝at Rexall, they had just closed the pharmacy as we arrived. Fortunately, we ended up finding a Shoppers that was open until 6:00, most had closed at 5:00. Since we decided to stay a couple extra nights, I didn’t have enough of my medications 💊 with me. To avoid having too many bottles, I only brought enough to last for the trip. Thankfully Dr Khan wrote me a prescription to cover what I needed.

Well, I know that wasn’t much of an exciting post, but I’m wiped and I’m going to get ready for bed now. 🌜😴💤 These laser treatments exhaust me. Last treatment’s tomorrow and then we fly ✈️home tomorrow night, assuming I can figure out where to go at the airport to drop our car 🚘 and get to the right gate…wish us luck!!

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 is our fifth day in Toronto. It’s starting to look like I’m going to need to create a non-profit business called something like ” The Help Heal Jenn Foundation”!! I can set up fundraisers and maybe a 5km run and other events to raise money to pay for my laser therapy – lol!!  I’m clearly joking. However, the costs do keep increasing. There are more and more costs going onto mom’s (👵) visa. I’m pretty sure that soon she and dad (👵 & 👴) will be able to travel around the world on the Aeroplan 💳 she’s collecting!!  It’s pretty crazy.

We brought the rental unit home, well not ‘home’ really, we brought it to our hotel. (Did I say this yesterday??) I’ve been asked for information and updates on the laser therapy treatments I’ve been receiving. They are really hard to explain! So, I’m going to give you a simple explanation…if I can!

There are four steps (kinds of lights) to the treatment:  The first is red light generated by 180 LEDs. The second step is an infrared band of LED’s, which penetrates deeper into the body.  (These first two steps, which are delivered by an array of 180 LED’s, are not actual lasers and can be used by the patient themselves. This is what we have rented.)The third step is the use of a red laser probe. Followed by the final step, a much more focused infrared probe, which can deliver more power and can go as deep as 22cm into the body.  These last two steps can only be performed by a trained technician in a controlled, clinical environment. Everyone in the room must wear dark, protective glasses (my mom 👵 has worn these dark glasses a lot this week!)  When they use the laser probe on my face, I have protective goggle-type things on. Similar to the ones that people wear for fake-and-baking (for those who choose to pay for cancer!)

The reason that all of this works is: “Light is absorbed by a variety of cellular components in the tissue being irradiated. In essence, light energy is transformed into biochemical energy resulting in the restoration of normal cellular function and morphology.” (Quoted from Meditech’s pamphlet about Low Intensity Laser Therapy.) Obviously this is a direct quote and doesn’t sound like a simple explanation at all!! For even more detailed information, go to http://www.bioflexlaser.com and/or see Dr Doidge’s book “The Brains Way Of Healing.” In the fourth chapter of his book he writes about Dr Khan and the laser therapy he utilizes. Actually, this is an amazing book (not just chapter 4) that I have only just began reading. This is where my mom (👵) found out about Low Intensity Intensity Laser Therapy.

Dr Doidge talks about how the brain can heal – duh!!! I just said the title of his book – lol!! And the word I’m about to write will change my life. Maybe not overnight, maybe not in a week or a month, but it will happen. It likely will not cure my Trigeminal Neuralgia, but with persistence, practice, exploration and the strong strong desire to take charge of my body and my pain, it will help. It will!

Neuroplasticity 

“Neuroplasticity is the property of the brain that enables it to change its own structure and functioning in response to activity and mental experience.” (From “The Brain’s Way of Healing”, by Norman Doidge, M.D.) The laser therapy is changing and healing my brain with light energy!!

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’m back 👩 and it’s even before 9:00PM!! That’s two nights in a row that I’m writing at a normal time. Yay me🎉!  We changed our flight ✈️ to Monday night. So we will be able to go to the clinic 🏥 for three extra sessions. Thankfully they are open both Saturday and Sunday.  Changing the flight was a bit of a pain…

Around 11:00 my mom 👵 called 📞 WestJet

The guy 👴 said, you booked through Airmiles 💳, or did you forget?

So she 👵 thanked him and then she called ☎️ Airmiles 💳

The automated system 💻 thanked her for her patience and her smiles 😃.

The system 💻 directed her call from line to line.

Finally asking if calling back 📞 within the hour ⌚️ would be fine.

Mom 👵 decided to wait until after to have her shower 🚿

But we waited and waited ⌛️, ever growing more dour 😠!

So she decided to have her shower 🚿 and no longer wait.

Of course that’s when her phone rang 📞, just like fate.

A little bit wet 💦,Mom 👵 then got on the phone,

To ask about changing the day we come home 🏠.

He put her on hold ☎️ and said he’d get things on track,

Then we waited and waited ⏳and he never came back!

So once again we made the same phone call 📱

Back 🔙 to the automated system 💻, we had to restart it all!!

Finally we got to the place where it says they’ll call 📞 you

And again we waited, there was nothing else we could do!

My appointment was lurking and we couldn’t be late ⏰

So mom 👵 got into the shower 🚿, we didn’t have time to wait!

And I bet you can guess 😏 what happened then…

Once she stepped into the shower 🚿they called ☎️back again‼️‼️

LOL!!

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!!