I’ve had a day of ups & downs. Still shaking & wavering between anger, worry, frustration & just damn annoyance!! Im hoping that something can be done about it. I need the situation resolved. I’m beyond lies & “he said”/”she said”. I still need to keep my mouth shut & I’m trying, so I’m venting without actually saying anything – if that makes any sense!!  I’ve been talking with a friend who’s daughter is in the same situation. I know that we will both work to have it resolved. And now, I move on…

A few nights ago I was writing about medications & side effects.  I said a few times that I would get back to the reason why I was talking about all of that gobbledegook!!!!  I’ve gone over the fact that I’m on a great deal of medications.  I talked about positive side effects. I didn’t get into the negative side effects, most of which are obvious; if you feel awful, it’s likely negative!! Some of the medications I’m on I take, not to help with my trigeminal neuralgia, migraines, etc, but to help alleviate many of the awful side effects that some of the medications that are supposed to help the initial condition cause (that was awkwardly said…but I’m too tired to fix it!!)  I’ve had colon surgery, bladder surgery & numerous other difficulties because of problems that occured as side effects to harsh, long – term medications.  I want to get healthy.  I would like to get off of as many of my meds as possible.  I mean, seriously, why am I taking things if I continue to feel the pain?  If they were an amazing help & it was like night & day (level 10 pain off meds & level 2 on), then it would be understandable, but, why take them if they do not seem to be helping??  Wow!!  I’m rambling again…

My point is, I feel like that commercial they used to have on t.v. (The one with eggs where they show 2 normal eggs & say “this is your brain” then they crack the eggs & scramble them in a pan & say “this is your brain on drugs.”)  Well, I feel like the brain on drugs!!  Those of you who know me prior to getting sick may notice a difference in how I talk, behave, move, walk, remember, well, basically how I function!!  (This is NOT a scientific explanation!!!) The medications that I am on for nerve pain are intended to slow down the nerve receptor sites, to basically slow down the nerve reactions.  The idea is that this should then slow down the mis-firing of the pain receptors and decrease the pain shooting along the nerve endings into my face, nose, gums, forehead, jaw…etc. The problem is that these medications slow down all nerve responses in our body, they cannot be directed to specific nerves…So, the resulting joy is that ALL of my nerves in my body are slowed down. I repeat ALL of them.  My memory is shot, my reflexes are off, I lose my train of thought (which you likely have seen first hand), I forget words mid-sentence, I stumble or trip easily, I can’t possibly list everything…too many things in our bodies lead back to our nerves.  (I just want to say that, obviously, I am not a doctor, or an expert, or a neurologist…this is not a scientific explanation in any way…it is just my personal experience!!) The main point is, ALL of the nerve reactions in my body are slowed down.

I believe this needed to be said, because I find that my brain is scrambled. My Doctor calls my pills my “stupid pills” & she is right, because that is how they make me feel!!  Writing used to come easier to me.  It would flow fairly easily.  I have been experiencing some frustration since I started writing this blog… I’m feeling those damn stupid pills!!!

And that, my friends, is all…

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

We are sitting in the Apple Store waiting for someone to come talk to us about why my daughter’s 4 month old iPod touch is completely unresponsive; black screen & nothing at all. Won’t charge won’t turn on/off – just nothing…don’t you just love kids & technology?? (Our appointment is at 4:20 & it’s 4:50) This store is always a bit crazy. As long as they can find out why it isn’t working. That’s what I care about!! Okay, home now…with a working iPod touch…hurray!!  Another off the cuff, quick write night!!

Why?  Why do I worry so much?

About everything and nothing.

What will he think? What would they do?

Do you think she’d do this too?

How?  How do I know where to go from here?

There are so many choices and beliefs.

Will this turn out right or will it steer me off?

I’m just waiting for their judging scoff.

Who? Who am I now?

Have I changed so much, both inside and out?

Am truly I so different? Or is it just me?

When you look at me, what do you see?

JKC

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

Not sure where to start today. Long, hard & strange day. Especially following such a beautiful night. Weird…

There are things I’m really wanting to talk about today, that are so so tempting to talk about, but I know I should probably hold off. My heart & anger wants to run full speed ahead, but it’s not my own heart that I have to protect. Which makes it much more fragile. I have to stop, to think before I speak & act. I don’t want to give over my power. If I have any in this matter. Even though it’s supposed to be a parent run program, most parents have absolutely no say.  I’d say it’s run by bullies. I will say that I’m not going to stand by quietly. It’s wrong & something needs to be done about it. Isn’t parenting fun!! Meetings at the school for one child & problems with extracurricular programs with another. How do you break a mother’s heart? Hmmmmmm…chronic pain? nope, just don’t you hurt my bleeping kids!!!  Anyhooo, moving on.  I’m just going to write whatever I write…here goes!!

Sly glances awaken her blush

Pretty words make her smile

Feigned vows reel her in

Perhaps he’s worth her while

Love and tears escape her heart

Soft kisses in the dark

Promises of flying high

Whatever lights that spark

Pull her in, innocent & sweet

Big eyes overflowing with trust

A tender touch, a disarming smile

Right before the knife is thrust.

JKC

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

Loving my girls right now!

Just had one of those beautiful in the moment conversations with my daughters that make you ignore the day of the week, the time of day, the age difference of the 3 women talking (12, 17, 42) & who’s the mother & daughter…

Just a beautiful conversation where I hear more than their words

I hear their voices

I see their spirits laughing & dancing & throwing their heads back in joy

I see how they trust in me

I hear their stories & dreams & fears & allow them to see mine

I know they see my pain, It can’t be hidden

It’s my turn to learn to trust & to laugh & to rediscover my own voice

It is time to begin

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

Holidays are over. Back to school. Back to “routines”. Back to “normal”. Um…no, not yet.  Also, while we’re on the subject, can someone please define “normal” for me (I’m pretty certain that if you “google” normal you will not find a photo of my family!!). Anyway, as I was saying, one day back doesn’t mean much at our house. It does not mean we’re suddenly all organized.  It does not mean everything just automatically falls into place. It does not mean bed time, or anything else for that matter, is on schedule. It certainly does not mean I remember when I’m supposed to pick my middle daughter up from her first dance class (& yes I did buy her an “I’m sorry you waited for me for almost 10 minutes in the freezing [come on it was only -30 degrees celsius] weather” hot chocolate after ballet class!!  Of course, I didn’t find out until after the fact that she made a choice not to wear a hat to school & then ballet today!!). Okay, yes, my son & I were late for play school today, but if you talked to his teacher, she’d be the first to tell you that we are almost always late – so that’s not exactly big news.  And, thank goodness there was a lot of left over spaghetti sauce, so that all I had to do was cook some pasta. (& by “I” I mean “my Husband”…)

As you can likely tell, I have not exactly been on top of things today…Clearly organization & I do not go hand in hand…and, I can try to blame it on back to school all I want, but, truly, it’s just the norm at our house. There always seems to be something that needs to get done, somewhere we need to go, etc & I’m pretty darn sure that our family isn’t much differs then most.  The fact is, kids keep you busy.  They just do.  Don’t get me wrong, I love my kiddos so much & I know that I am very blessed to have 3 healthy happy kiddos. The age range of our kids is pretty far apart, we have a 4 year old boy, a 12 year old girl & a 17 year old girl.  The little man was our “surprise”, but he was a wonderful, blessing of a surprise!  Without those beautiful girls of ours, on the days when my husband was at work & when I have my really really bad pain days, especially prior to my brain surgery,  (my really bad days which are obviously bad, they’re like I can hardly function or even get out of bed), I don’t know how I would have taken care of my little boy without my girls (&, sadly, my iPad).  Especially our oldest daughter, she has done so much to help me. I am afraid that I have given her more responsibility then she should have to deal with.  I’m hoping that this will make her stronger. I do carry a lot of guilt about it.  I can only hope that she has learned (or will learn) about nurturing, empathizing  & putting other’s needs before your own. (Okay, reading that last half of a paragraph over…as the night before, very kerfuddled thoughts again!!)

I’m having a rough (or I’ve had) day today (meaning sharp shooting nerve pain in my right cheek starting just in front of the ear & zooming along my jaw line along with other fun stabbing pains, feelings of extreme nausea & I really wish that someone would just take the damn ice-pick out of my ear instead of jabbing it further in!!!), which increases the stress (I’m sure it’s hard to see why that would be the case.) At least from my perspective.  It’s almost been 2 weeks that I’ve had flu-like symptoms caused by one of my medications. (Most of my prescriptions cannot just be stopped cold-turkey. Doing so could cause fun things like cardiac arrest &/or seizures…Does anyone know where that expression comes from?? Stop cold-turkey…seriously!! I’m curious about that!!)

Well huh…I am falling asleep again so I am off to bed.  I didn’t get to finish that conversation from last night…guess that will be tomorrow.

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

Hi folks.  Late again.  Story of my life, which doesn’t have to be a bad thing – does it? Our world is so focussed on go go go, do do do & multi-tasking up the ying-yang (whatever the ying-yang is??) Wow!  Was that ever a muddled thought processes or what?! I have a difficult time keeping my train of thought on one thing. It all gets muddled & kurfuddled as I write it down. (Ya!! That’s a word!! As of now…or, I bet I could find it in a Dr Seuss book!!).  You have no idea how frustrating this is for me.  Well, unless you’ve known me for some time.  (Which, at this point, is highly likely the majority of the people who read this, if any!!)  It, my “brain farts” & my frustration, goes back to my medication post from a couple of days ago…

Just to recap, I am on a lot of meds! I mean I’m really really taking A LOT of medications!!  Now, just to be clear, in case you didn’t get the memo, I AM ON A LOT OF MEDICATIONS!!!! 

This is significant because…well, they bleeping bleep me up & bleeping make it so I can bleeping barely bleeping function & bleeping hardly bleeping think or bleeping do bleeping anything!!!  AND FOR BLEEPS  SAKE I AM SO SO SO BLEEPING SICK & BLEEPING TIRED OF IT!!!!!  I JUST WANT MY BLEEPING LIFE BACK!!

Sigh, deep belly breath in & belly breath out & repeat, belly breath in & out, repeat 10X.

I don’t think it’s newsworthy to say that most medications have side effects, some desirable  (usually the exact purpose for taking the meds) & some, well, not so good side effects.  Usually, if the medication brings about the desired response, you can deal with a few of the pain in the butt type of side effects.  For example: Jenn has a migraine headache, Jenn takes the migraine medication, Jenn’s migraine pain decreases & Jenn feels better, a little drowsy & loopyish, but the pain has improved…YAY for Jenn!!  Jenn can deal with feeling sleepy & having a bit of a dopey mind for a short amount of time, because the pain is better. Yay for Jenn!!  (Too bad I am not this mythical Jenn character, it would be super nice if my medication worked & I felt better just by taking one little pill.  I’d absolutely be saying YAY for Jenn!!  Too bad I do not live in this ridiculous, crazy, out-there, make-believe, fantasy world with this other mythical Jenn…)

Holy smokes!  I just saw the time!! Yikes!! I didn’t want to go to bed late tonight.  I really have to start to find time to do this during the day instead of once the house shuts down.  As you may have guessed, this whole discussion about side effects is leading somewhere, I just haven’t gotten there yet!  I will have to continue tomorrow.  I know that a big part of healing & taking care of yourself is getting enough sleep.  Which won’t be happening if I keep on going tonight.  The writing daily, regardless of how long or the topic or how serious or silly, is a good thing, but staying up this late to complete it, not so good.  It’s off to bed for me!!

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

Last night I was complaining about medication, healing myself, etc…  So, for the record, I do want to point out that I have an exceptional doctor who has done all that she can think of to help me.  I started going to her about 20 years ago, so she knows me well. She knows my history.  She knows my family, including extended family.  She advocates for me.  She is kind & easy to talk to.  She speaks to me as an equal.  She means well & has been trying to help me to get better, or at least find a way to decrease my pain. In her defence, I am the only patient that she has ever had with Trigeminal Neuralgia. She readily admits this & lets me know that she is not sure how to proceed & is hoping that the pain specialist will be able to help.  She has also referred me to numerous specialists & any time that I have asked her about any alternative treatments, she has always told me that if they work & help me to feel better, to go ahead & try them. Her goal is the same as mine, to make me feel better.  I am very lucky to have her as my doctor!

I just wanted to be clear about her & the medical field in general. I am not a fanatic, who adamantly attacks & criticizes modern medicine.  I am not going to rant day after day about poor treatment, bad this & that. I may have some complaints or frustrations, but that is all.  Really, I am just not willing to accept that I have to, basically, “suck it up” and come to terms with the “fact that I am going to have pain for the rest of my life!”  I can not & will not accept that!!!  In my world that is called GIVING UP!! Not happening!!  I mean seriously, I’m only halfway through my life – half way!!  I will not be in pain for the rest of my life!! Nope, nada, not going to happen!

Well, it is now 2:10 Sunday afternoon & I fell asleep last night (I mean, I literally fell asleep, with my iPad open to this page on my lap! lol!!) without posting the above paragraph…it was intended to follow the brief & silly, “I’m late, I’m late” post! So, although it may seem like “Yay! I’m on time!” Technically, however, this really was last nights post. (Maybe I shouldn’t have added that, because today looks like it’s adding up to being a hectic one…

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

Here I am, yet again, & it’s almost midnight. For some unknown reason, auto-correct is not working & the font is also different…I’m still not even pretending to claim that I know how all of this works. However, at least I am here right!? I wasn’t all that fond of the old font, but this one doesn’t really float my boat either (lol!! I don,t think that I’ve ever actually used that expression!! How exceptionally cheesy!! lol) Tee Hee!! I think that my iPad just read what I wrote, because the font changed back immediately after I wrote the word cheesy.  Maybe it just didn’t appreciate being insulted… I’m angry with myself for not getting any of this done before my house shuts down.  By “shut down” I mean: kids are asleep, dishes are (mostly – lol!) done, hubby is still awake, but is quietly watching television or playing a PS4 game, Daisy (my dog) is curled up, either by my hubby (who claims to hate her, but is often caught petting her or playing with her when he believes that there were no witnesses!)   < FYI, I CAN NOT STAND the H word > or else Daisy will be up in the bedroom with me, in her little cozy bed at the bottom of ours on the floor.  As riveting as all of this is, I have not really said much at all…& I actually am going to post this right now. Then, help my oldest with her “I can’t sleep mom” issues…I will be back. I have many sleep issues of my own…

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

So, as I mentioned last night, I’m still attempting to figure all of this out. And, perhaps this wasn’t even read last night, which would bring a sense of relief somewhat.  Frankly I feel like I’m kind of scrambling…Anyway, I’d be relieved because it looks like my “challenge” to write everyday was blown on the very first day – why?? Because, I didn’t know how to actually “post” my post!! So, my first “official” post was at 12:07AM😥😥 (I really had finished before midnight…so it counts darn-it lol!!).

Today’s isn’t much better or earlier!  My mission to find a way to heal myself hasn’t changed. I lowered my one medication last night, no changes though. I have an appointment with a pain specialist at the end of February. I feel like I just want to tell him that I want everything out of my system. I want a clean slate!  I want my brain back, or what’s left of it!!  At night I take 13 pills!! Those pills are not including ones I have that I have to take as needed, migraine medication, pain medication, gastrointestinal medication etc. etc… And, sadly enough, I’m truly not exaggerating, that’s how many I take at bedtime (I also have many to take in the morning & throughout the day. My 4 year old son has watched me & asked me why I take so many pills before bed.  The saddest thing is, I don’t really have a good answer for him. I tell him that it’s for my “Owwy face” (is owwy even a word..??). It’s not a good answer because I’m still in pain. Why am I taking this many damn pills when I still feel awful?? Or, honestly, I believe I feel worse!!! Shoot…awful post…I have to go through. Will continue tomorrow…

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

Tonight’s post will be brief. I realize the irony that, although I am starting a blog to challenge myself to write everyday, for the next 365 days, (in 2015) it is currently 11:30pm on January 1st and I have written nothing. There is so much set up to this & I am feeling very technologically inept!! I still have a lot of muddling through & wish I could take back telling some people I was doing this, but then, where would the accountability be right?? So, hopefully, this will actually post on the correct site, also, I’m hoping that all of my personal info isn’t right there with it…for all to see…then again, the only ones likely to see it at this point will be family &/or friends so I’m sure that I’ll get it figured out before I attract any readers!  Lol!!

Enough with the rambling. The point of this blog is to challenge myself to write everyday, because I love writing & used to do so all of the time, but I seemed to gradually just stop doing things that I loved, just for the sake of doing them. “Growing up”, having children, going to University, getting sick…so many things happen in life that make us change or act differently. We often do so out of necessity or without even realizing it…so, I want to live with intention, I want to write everyday, just because I love to write.

But, there is another point of this blog, it is to search for a way to heal myself. I am not getting into my medical history tonight, ironically because the new medication that I’m on has been making me feel so ill that I really just need to lie down. I will say that I am decreasing it (gradually & safely). I am so tired of all of the medical opinions, all of the medications, the damage I know that has happened internally. So, it’s time to find my own way; which will include meditation, alternative care, I’m starting a weight loss challenge, I’m going to be writing everyday…(just in case I hadn’t mentioned that!!).  I’m not sure what I’ll do or find on this road. I not sure of anything. For those super scientific people out there, I won’t be using a very scientific method – feel free to critique that, but I am saying here & now, it’s highly unlikely that I will try one thing & one thing only for a select amount of time. Followed by another specific treatment etc. etc. Nope, not in my nature…I’ll probably try to meditate daily, eat better, try different things…

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