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WARNING: If you don't know me that well... this more than likely will be a good long read... That's why I've named my blog "The Rambling Train".
Ok, moving on... have you gotten tired of me talking about Chiari & all it's related stuff, yet? Well, hope not... because, I'm just getting started!!!
As you probably know by now... I am scheduled to have surgery on Friday the 20th to hopefully get rid of these blasted headaches & other pains! Whether or not it's successful... I still want to help get the awareness about Chiari out there.
One of the things I've been doing is trying to find a way to get Dr. Oz to do a show featuring Chiari... I posted a discussion on the discussion tab of his Facebook fan page... I even have written a letter (or 2) via the link on his site.
Well, the other day I received in my Facebook updates a message that the show was looking for women who suffer from insomnia... That being one of the symptoms of Chiari, I called the # & actually was able to speak to someone who works for the show! She's the one trying to get an audience filled with insomniac women. (Why does that sound creepy?)
Anyway... I told her about my condition & that there are a bunch of us that want him to do a show about it. She gave me her email & asked me to send her some info. Soon as I hung up the phone I did just that! (I'm hoping that the length of it didn't make her delete it right away.)
Even if I don't get a reply... at least I've put the notion in someone's head on that staff! Maybe if this girl hears enough about it, she'll put it on the table next time they're asked for show ideas.
Now, as for the reason behind the title of this blog... Because of the surgery, I had to stop my hormone replacement (along with Ibuprofen) a week before the surgery, because it could it could possibly cause blood clots (during or after, I'm not sure which). So, anyone who has been through menopause (or had a hysterectomy, like me) knows that you get some serious hot flashes without hormone replacements...
Well, it only took a couple days without & they're already starting. Doesn't help that it's muggier than all get out last couple days! *sighs* Soooo looking forward to WINTER!!! (I've always said that I'd rather be cold than hot... you can pile on the clothes & blankets... but only can take off so much!!!)
It wouldn't be so bad if being so hot didn't compound (right word???) the headaches even more... because the flashes usually are at my neck & back! A week without them is going to make for one cranky lady!!!
Another reason I'm blogging today, is because I've felt I needed to explain a couple things... & since I think many would like to know what I'm about to say. (If they don't already.)
Let me just put it this way... when I say I have a headache... it's probably more than an average person's headache. (Especially if the barometric pressure is fluctuating!) I take assessments of my pain 3 times a day. (Mainly to help me recognize when I should take some medicine... & also, because my lawyer thinks it may help with my Social Security Disability case. *another thing to sigh over* & another long story!) Also, for me & anyone else to be able to determine if the symptoms are getting worse... & to see if there are any patterns.
Anyway... I've been dealing with what I've been ranking as an 8.5 or worse headache each day for the past 4 months or so (had been about 7 for a long time.) Though, sometimes I wonder if I've ranked it too high... maybe you all can help me to determine it.
This concerns me, because I was recently told that to get out of the "recovery" unit where you go right after surgery, my pain would need to be at a 4. (Now, the person that told me this is not used to ranking her pain, she says, & she is like me... tries to ignore the pain as much as possible.)
I guess I need to know how I really should be classifying how bad I'm hurting... because that "Mosby" pain scale (with them little happy & sad faces) is not working!
To help you, help me... let me explain what I can do at this level I'm say is an 8. (Which by the way, oddly enough, seems that sometimes, I do more when I'm in more pain (but not when it's a 10!))
As you've guessed, one of the activities I do is play games (mainly via Facebook) on my laptop. To do so, I have to have a pillow at my back, one to support my neck & head, & one under each arm. Since we've moved to this new place, I'm able to put my legs up on the "higher" part of my coffee table which equates to same height it was when I had a pillow under my legs at the old house.
I take bathroom breaks & get food when I have to. Some days I will get so engrossed into my web surfing & / or games that I forget to eat, until my stomach starts to growl... not that I can't stand to loose a few pounds!
Then there are the days it's all I can do to put the laptop down & get up to use the bathroom... let alone grab something out of the freezer & plop it in the microwave... or some bread in the toaster. On rare occasions I'll make eggs or something else that requires a little more energy.
When I'm not playing games, I'm watching TV... (I record a lot of stuff to our DVR at night, so I have something to keep me occupied when I'm just not feeling up to using the computer.)
Well, let me tell you this... right now I'd say my pain is at almost a 9... however, I have yet to take any pain meds for it... mainly I was hoping it would go away if I got up & did something... which all I did was rinse a few dishes off & got the dishwasher ready for Hubby to roll over to the sink when he got home. (Because I knew I didn't have the strength to hook it up to the faucet... sometimes I can... today is just not one of them!)
Also, when Hubby was home & outside with the dogs, I needed to tell him something & I put on my shoes & walked out to him. (Again, hoping it would help.) However, the humidity, the walking, the typing & the stress of going over a grocery list pushed my pain from the 8 to the 9... Oh, & also, we have storms & rain in the area (going to miss our house for the time being!)
Don't ask me to tackle any stairs today... that might just make me pass out!
(ARGH!!! these dang gone hot flashes are NOT HELPING!! (Sorry, having another one at the moment.) *grabs hand held fan*... OH, wait... I have a little table fan... Maybe that will help.))
Ok, maybe this analogy will help... Think of a pressure cooker... that's how my head feels... as if it's ready for someone to hit that release valve!!
There are days, though, that the pain is stabbing or throbbing or down right just feel as if I can't stand... then that's when I'm not on the computer & I am taking pain meds. (Which right now (& have been for past few hours!)... I'm trying my hardest to get these thoughts out of my head so that I can call it a day!!!) (btw... I have not been typing this all at once... usually when I am long winded like this, I have to take breaks... it's the only way I can get it done!)
One more reason I tend not to take anything (when I probably should), is because I'm trying to push my tolerance... which at this point, I don't know if I'm doing more harm than good. I don't know... I guess I'll find out Friday when they cut into me. I just hope that when Dr. Di cuts open my skull that my brain doesn't explode! ;)
I'm curious if when he does these surgeries if he hears a whoosh of air when he makes the cut?? I say this because of the one CSI episode (that was re-aired a couple weeks ago, featuring a kid who had Chiari) the corner was doing an autopsy & removed the boy's skull & the brain... uh, expanded? You could definitely tell that it was under pressure! (FYI... the kid did not know he had Chiari... & they say he died from a blow to the head, if I'm remembering it correctly.)
Anyway... I'm trying to think of what else I could tell you that I do that may help me to judge if I'm giving an accurate pain level assessment... .... (think think, that's what these dots are... thinking. LOL)
................................................................................. yeah, still thinking!!!

Argh, it's hard to think when your head is pounding!! That's why sometimes I ramble, I think... because I'm trying to think through what I want to say & the throbbing is distracting me! ;)
Oh... I know, when the dogs bark I put the laptop down (which by the way, I have setting on a nice little tray so that I can use an external mouse... more comfy for me that way!)... & I go see what they're barking at... & sometimes I let them out.
At the old place, we had to put them on leashes & stand out there with them... Now, we're at a place that has a radio fence... & they're finally getting used to it, to where we can put their zappers collars on & open the door.
After Friday, I know I will not be able to jump up every time they bark. Oh & when they do, it vibrates my ear drums so badly that it makes the head ache even more worse. Not to mention the rush of the blood draining when I stand up so quick! It helps that they have a couch back their... because when I grab their collars to put on them, I'm already having to sit down!
I really like this place... we have a deck to where I can sit out & watch them do their thing... when it's not hot & humid, or raining!
Speaking of ears... the ringing in my ears is another thing I asses... I usually put it at the same as the headache, if not a little more... it gets a higher ranking when it's so loud I can hear it over the tv, or the cooling fan under my laptop.
Oh... one other thing... I don't take showers when no one is here with me... unless I'm having a super duper day (which has not happened in months!), because I've come too close to passing out during a few of them! & When I do take one... I only wash my hair once a week (or less)... because the action of holding my arms up & rubbing my head wears me out... and makes the head hurt worse. *sighs again*
Some days I don't even change my clothes. (I know, ewww, huh? Well, when you feel like you're going to hit the floor when you bend over to pull your pants up, you think, why even bother?) When I can't shower, I do try to wash up... like giving myself a sponge bath, almost! Ok... enough of that... I know, I know.. TMI, right??
Since we've moved here, I've been doing better about changing my clothes & taking showers... however, NO WHERE near as much as I should... or as much as a normal person!
Today, the only reason I changed was because I was burning up in my sweat pants & night shirt. (Which is just an XL t-shirt!)... & that didn't happen until after I had walked out to talk to Hubby a little bit ago!
Well, I guess that's about it... has to be, because I've lost the train of thought (mainly because I got distracted by an email... then other stuff... & before I knew it. It's after 8p... & I still haven't posted this blog! Geesh!
Take care all! ~Toodles!~
P.S. The little doggie in the picture is named Zippy... he had his "surgery" a few days ago & was shipped to me to take care of. (The purple ribbon is for Chiari Awareness & has a zipper in the back of his head to represent those who've had the decompression surgery.)