Let the hot flashes begin...

ATTENTION FACEBOOK Friends AND Family... this is my blog & it's open to EVERYONE... & if you wish to comment, you can do so on FB... no need to set up a Multiply account, if you don't have one & don't wish to have one.

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.)

Lots of calls made...

Well, today I've been busy since I woke up around 10 a.m.... busy by making lots of calls.

Won't bore you with all I had to call on... I just wanted to post this here, instead of just on Facebook, so all you who are here but not connected with me on FB can read what's the latest. (Also, because this is what my dad reads, because I can't seem to convince him to get a Facebook account.)

Speaking of... I've been enjoying that because I can just post little "status" updates there. Instead of a blog... & since I've really not been feeling like blogging, it's been great to have... & that way I don't bother you all with the mundane things in my life. LOL

(Also, I can play games there like Family Feud, Bejeweled, Collapse, & several others.) (See, I'm hoping that mentioning Family Feud will get my dad to ask me to set him up an account... *grins & winks*)

Oh, don't worry, my dad gets his "updates" from me at least once a week when I call him on the weekends. So, he's not missing anything when I am only posting on FB. However, it still would be great to have him there too!

I just read a story the other day that the age of the average FB user has increased significantly. It's not just for college kids anymore. Case in point... my mom & many of her sisters are there.

Sure is a great tool when you have a large family (lots of Aunts, Uncles, & Cousins), like we do, to update the whole family about something. (Such as when my mom was in the hospital at the beginning of this month.) Plus, I have many church friends I'm connected with... and I've amassed a great deal of other "Chiarians"... which helped lead me to a fabulous neurosurgeon...

& With that it leads me away from the rambling now & on with the "news"...

One of the calls I had was with my neurosurgeon's nurse to talk about my upcoming surgery & if I can get the pre-op testing done here... So, IF there is any problems they can treat it now, so that my surgery does NOT have to be postponed again!

She said I can have the urine culture taken care of here locally... but the blood tests & etc need to be done up there. So, she will relay to scheduling that I want to be scheduled a week before, instead of the day before!!!

Then I asked, if they don't call me by... August 5th, can I call on the 6th? She said yes & gave me the number. Hopefully I won't need to do that.

Also, I called one of their "quality" type of departments to complain how the urine test was not really sterile... & not to be too graphic... let me say it this way... I was given a Styrofoam cup... & had to poor it into a tube. NEITHER of which was wrapped separately to ensure a "sterile" environment.

I spoke to an "ombudsman" & she said she will pass the information onto the "quality department" & they will review it & put new policies into place... IF they feel it's needed! When I was talking to her, I said it surprised me that particular testing was a bit lacking, because I had 2 different nurses take my blood... was told it was for "security" purposes.

One would think if they have that in place... then why was the other test so... well, under "valued"? (Not sure if that's the word I wanted... but I think you know what I mean.)

So, anyway... I also wanted to let you all know that I told Dr. Di's (my neurosurgeon) office, since there has not been any cancellations as of yet... that I just want to stick with August 20th (unless something happens & we need to make it an emergency... aka, I have a bad seizure attack or something along that line. Please pray (or think good thoughts) that this does NOT happen!)

Yep, that means we're in the 1 month count down again!!! Please also pray it's NOT postponed again!!

When it gets closer to surgery date... I will give you a few other things I'd like you to pray (or whatever you prefer) about. (aka: No need to do a larger incision... (I'll explain about that when needed.))

Ok... sorry to taken so much time... but I wanted to be sure you were up to date (YOU TOO DAD!) on what's going on.

OHHHHH .... If you have not been reading my blogs & don't realize what I'm talking about... Here's a very quick synopsis...

I have Chiari Malformation. (Basically my brain is too big for my head) & on Aug 20th they're going to do what is called a Posterior Fossa Decompression (aka: "Decompression") Surgery. (It's just to remove a little bit of the skull bone at the base & possibly a little bit of Cervical 1 (C1) (neck) bone. This is to relieve the pressure caused by the brain blocking the Cerebral Spinal Fluid (& blood) from flowing properly. (That's the easiest way to explain it.)

If you'd like more information, there are a lot of great sites out there... & I'd be happy to post them... just ask for it in a comment below. (If you're from Facebook & reading this... just leave a comment under the link that brought you to this blog... unless you have a Multiply account, then you can leave it below.) :o)

One in particular is: Conquer Chiari.org.

Thanks for your time & I hope you're surviving this heat. (Or cold... depending where you live!) :) For those in the heat... please remember KEEP HYDRATED!!!

It's confirmed!!!

I have been telling everyone for years I have Chiari Malformation (CM)... & in December some doctor had the nerve to tell me that I did NOT and that my symptoms were only because I had done the research about CM & that I was only "imaging it all". WHAT A LOAD OF HORSE MENU!! *grins*... (I tell ya, I try my best not to swear!)

What he didn't know, forgot, or just seemed to ignore is that I've had these symptoms LONG before I knew I had Chiari Malformation.

On March 19th this year (2010) my symptoms escalated (on the way to dinner with my mom & sister to celebrate my 41st birthday!)... to make a long story short... I used to not get car sick... well, this day I did... and in a major way. Felt as if I was going to pass out & the pressure was horrendous.

Here I thought the extreme pressure I felt on the airplane to Arizona (last April) was awful... this time it seemed worse.

Ever since March 19th... things have just gone down hill.

So much that I finally, upon recommendation from many Chiari friends, called Dr. Di's  (pronounced DEE, not Dye. *Whew & giggles*) & set up a consultation... that was this past Thursday.

During this visit, he confirmed, (WOO HOO) what I already knew... I do in fact have Chiari Malformation! WHAT A RELIEF to know an expert in CM sees it!!

Well, then he proceeded to tell my mom & myself that they're already scheduling into September... however, he wants to get me in sooner than that... Soooo... my very 1st (& hopefully only one) decompression surgery is scheduled for June 25, 2010! (Barring any problems with insurance & any complications.)

Dr. Di said if I have any more syncope (blacking out) and / or seizure episodes that I am to get to the local ER (about a 1/2 mile away, thankfully!) Once he's notified, he may insist & schedule my surgery much sooner. (Praying that doesn't happen!)

So, yes, it is all in my head... but it's PHYSICAL, not mental!!!... AND I have proof now... The MRI picture above is from a scan I had in 2000... the line shows where the brain (cerebral tonsils SHOULD stop)... this is how they determine it's Chiari... and it's how they estimate the herniation length. This image is a little misleading in a few ways...

1. The line (drawn in 2000 by the doctor reading it) is a little low in it's angle... which would mean the tonsils are herniated more than originally thought. (We'll get the accurate length from Dr. Di after the surgery) At the moment, it's estimated at 5mm.

2. This, I believe, is a left side view... & per Dr. Di... my right side is worse. (Which I had a hunch!)

3. It's quite possible that it may be worse than it was back in 2000. But, that is here nor there!

4. It's a known fact now that Chiari experts are more worried about the width & not the length... also, how much is it blocking the patient's CSF (Cerbral Spinal Fluid) from flowing as it should!!!

This is such a HUGE relief for me... in many ways. Mainly because it confirms what I already knew... & also that I know there's an end in sight now... an end to my suffering... or at least to make it more manageable.

I invite you to follow my progress on Facebook. I have an "event" set up where my friends & family can post (if they want) messages of comfort; encouragement; support; prayers; & all around goodness... If you'd like to join this & you're not connected with me, already, on Facebook... leave a message below & I'll send you the PM with the details.

Along with messages of updates & etc... I'm going to hopefully use it to post notes of what I'd like to do after recovery & other things like that!!!

Those of you who are already connected with me on FB... & would like to be invited to this "event" and don't see an invite... let me know either here or on FB & I'll send you an invitation soon as I can.

By the way... if you did not know... being invited and "attending" this event (via Facebook) does not mean you'll be there at the Cleveland Clinic... It's just so that you can receive updates & posts by myself (and / or my family) about my upcoming surgery... and the recovery.

I'd like to try to keep it all in this one place so that I do not overwhelm those who do not wish to hear about it... AND so that I have just the one place to update. (Make sense?)

I would post a link here to the event... HOWEVER, this blog is open to EVERYONE... & because of that and that my FB page is NOT public... well, you get the idea! :)

That's all for this trip, on The Rambling Train. Take care. ~ Toodles! ~

Just a quick update...

Hi all... I am mainly posting this for my dad, so that he doesn't worry... since it's been a while since I've blogged.

Hubby is STILL looking for a job. My mom is doing good... her surgery is Jan 22nd. (Day after my Social Security hearing.)

Me, well, I'm ok. Just dealing with the Chiari headaches. Awful I tell ya. However, good news... found out that the OSU Medical Center has FOUR locations with MRI machines that can do the specific one that I need. Now all I need is to get the order... oh & try to get financial aid too... or maybe a generous benefactor to pay for it.

Well, told ya... just a quick one this time.
Take care & *waves*
P.S. I wanted to share the above photo... *giggles* I know my dad & step-mom will love it!

Good news on the SS Disability .... sort of... (Chiari related)

Spoke with the attorney today & he said we FINALLY have a hearing date scheduled for 1-21-2010.

1st... I can't believe it's going to be 2010 in just about 7 weeks... WHAT HAPPENED to 2009??

2nd.. The attorney said they're going to have a neurologist at the hearing. Which will all be done via video conferencing.

He also said that if all goes well & I'm approved, it will be 30 to 60 days before I get the 1st check... which should be the retroactive money. (Over 3 years worth!!!)

So, once we have that accomplished, I'll be scheduling the surgery soon as I can.... However, BEFORE I can even think about that... I have to get that MRI Cine Flow study done... That won't happen until Hubby's new insurance kicks in late this month....

UNLESS a friend, & advocate for Chiarians & a Chiarian herself, finds out if a certain radiologist will do the MRI for FREE... yes... I said  FREE!!!! Only thing is... since I haven't heard from her... I'm thinking that the radiologist can't get privileges down in Columbus. ... I'm about to tell her to tell the guy that if he can do it... I'll get to New York!

Just hope if I do that... they don't mind I'm not going to the doctors in New York.

Who knows, maybe the doctor will tell me I don't need surgery after all & just will need to take some medicine to relieve the pressure. We'll see.

Anyway... that's the update on that.
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A quick NaNoWriMo update (in case you didn't see my quick note)... It's on hold for me right now. I have completely lost my muse... & the mood of creative writing. I think it's from the lack of sleep I've gotten this week... SOOOOO hopefully things will improve over the weekend.

Stay tuned for more...
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*HUGS* & ~~Toodles~~

contacts only update

Hi all... I am having a really bad Chiari day... I know, you wouldn't be able to tell by the prior blog... but I'm trying to just ignore the pain... however, it's getting bad enough I may just shut $hiba down & go back to sleep...

So, if I disappear without warning tonight, you'll know why.

I'm not leaving comments open on this... because I know you all wish the best for me. This is just mainly to give you a heads up.

*HUGS* to you all! :o)

It IS all in my head!!! (update)

It's true... My problems are all in my head... LITERALLY... for those who are new to my blog... & for those that still are unsure about my condition Chiari Malformation... Here is another article with a MUCH better graphic illustration AND explanation than what I could ever say.

btw... when you read it... all the symptoms listed.... THAT'S ME!!

Well, lack of sleep does not help things... so... I'm signing off now. (Time to stop fighting it & JUST GO TO SLEEP!!!!)

Toodles!

**update** I did finally get to sleep after 9:30 p.m... but woke up around 5 a.m. with one of my headaches. Unfortunately today... I have to just grin & bear it... at least until about noon! Another one of them hectic mornings for me.

Soon... it will all be over & things will get back to their calm & fun time.

Toodles! :)

Chiari Malformation

As most of you know, I have a problem that causes a lot of headache & other problems. Some have requested I post the information about it again... So here it is...

Take a look at this photo... (found it on Google a long time ago & had it saved)... I shared this on Y!360... so to some of you it may look familiar.

Anyway, pay attention to the small arrows that show how the fluid flow should be (on left) & how it is for us who have CM.

One of the solutions to relieve pain is to lay down... That is why some days I talk about sleeping a lot. I've also been told by other Chiarians that the minimum amount of sleep one, with this Malformation, should be 8 hours.

This is just a tip of the iceberg with this... As I find out more, I'll post it.

Thank you for your time.

HOT HOT HOT!!!

Yes... It's getting hot again... so much so we've had the air conditioning running since night before last! Right now at just before Midnight... it's still above 80° F!! ... & it's not even officially Summer yet!!! Does this mean we're in store for a awful summer?? ARGH!!! (Regular readers will know this... I HATE THE HEAT!!!)

I do have to say though... I took my dogs out about an hour or so ago & the humidity must have been down... but it was actually nice out... or maybe because the sun was behind the clouds, or maybe because I've been in the air conditioner all day... either way it's was surprisingly nice!

I even suggested to hubby, let's go sit out on the front porch... which he declined, because he works in a garage all day & is completely worn out... Which I can understand! (It's a literally a garage... industrial... but there is NO air conditioning... so the summer is very hard on him & the other 5 guys in the shop!!) Well, maybe one of these evenings... However, I would probably be still seen with $hiba (my laptop) on my lap!

Alright, my hubby said I should not blog on this... but I can't take it any longer... I have to voice my opinion on that new show CBS is trying to swing into their Summer line-up... Called "Swingtown"...

I mean... come on, don't we have enough of these kinds of shows, already... are they trying to tell us that the 1970's "past-time" is coming back into "fashion"? I sure hope not...There is a many other things we could "bring back"! I personally will not be watching it! (I even mute of fast fwd past the commercials about it.) I also hope that America will show their distaste in these kinds of shows. At least I think the majority of us don't like it... we'll see!!

No, I am not calling for a boycott or anything like that... However, maybe we can all try to send a message to "Hollywood" and start asking for MORE family friendly shows! I miss things like "The Cosby Show"; "Cheers"; "Quantum Leap"; JAG & etc... Why can't we have more things like that. Do we have to show our kids the "mistakes" we've made in the past? (Oh, don't get me started on the clothing from that era! LOL!!!)

Ok, that's all I'll say about this. I'm sure that I'll get ridiculed for this and be called a bit hypocritical for being a member of the Second Life community... & I don't want to get started on that again. Please just keep in mind this is just my opinion & I welcome yours as well.

As my hubby said, "Let everyone make their own decision about the show." Well... I am just give you my decision... what's yours??

Moving on... it's been awhile since I've been on a blogging roll... so, I'm going to take advantage of the "groove" I am in. (Oh, NO pun intended!!)

I just wanted to let you all know what's been going on in my life... as dull as it may be... Yeah, some may find it dull & very relaxed... but to be honest for me I really have been using this past couple ... OH MY... it's almost been TWO years since I lost my memory... to deal with all my "ailments"!! (I won't bore you with all that's wrong. If you'd like to know, just send me a PM!)

Side note... for the newer readers to my blog I have added a link (to my older blogs about my memory loss), on my front page in my "Tagged Content" module... (4th one down).

Anyhoo... I'll just bore you with my daily "routine"! LOL!! Since I went to California in mid-April (well, actually before that), I have been sleeping during the day... as late as 4:00p & then when I get up I play with my Webkinz account (more on that later, maybe another blog). At some point I do something for supper.

Back to the computer after eating. Along with having the tv on in the background I am either surfing the net; playing Webkinz games; surfing through the blogs here on Multiply... or even looking to spend the money I don't have on eBay! LOL... Oh, can't forget the Pogo games! (I haven't been on SL that much. Just haven't been in the "mood" to be "that" sociable!

Anywhere from 10:00 p.m. (on work night) to about Midnight hubby will head to bed... I am still messing around on the computer & at one point I'll finally shut her down & just watch tv. Before going to sleep, I have been staying up & to watch Game Show Network (GSN) & them old game shows... all the way up until 4:00 a.m. The shows like "What's My Line" & "I've Got a Secret". Some nights I'll watch them after watching some recorded stuff... & by that time hubby's alarm is going off (5:00a.m.) & then I feel I need to get the dogs out...

Speaking of... why hasn't "What's My Line" been remade? Now, I'm not asking to see big money / prizes like the game shows seem to be doing... I just want to see the celebrities try to guess employment of the "guest". Then seem them try to guess who the celebrity guest is... If you haven't ever seen these old (black & white) shows... I highly recommend it... Record / Tivo it to watch later if you have to!

Now of course I do all this in the midst of the regular "distractions", such as: answering emails & private messages, to taking the doggies out to do their thing & etc. AND that's on a GOOD day... On bad days, it's all I can do to turn the computer on & do my "daily" things with WebKinz. (I promise, I'll blog about that later... I am waiting to see if I "win" any on eBay in the next day or two... so that I can include them in the photos!!)

What is a bad day for me? Well, it can be either complete exhaustion to major headaches. Then there are them days I just don't "feel" communicating or basically anything! Yeah, it's a bit of depression... however, in all this "time I've had on my hands", I have found that it can all be pointed back to my Chiari Malformation.

If you haven't heard anything about CM (I used to abbreviate it ACM) it can be painful in many different ways.

Now if I can only get SSI to approve disability that I've been trying to get for over a year now! Then things will be a little easier around here. I won't have to hear hubby complain so much about the bills that are piling up. Or even to deal with the collection agencies.

Ok, where was I going with all this?... This train has been derailed! LOL!!! I hope this won't stop you all from hoping aboard on the next ride... on The Rambling Train!!

ACM - what is that?? - 8-24-07 (entry #4)

I just now remembered I needed to let you know what ACM is!! Beside the fact that it's one of the reasons I'm tired all the time!

By the way... this purple ribbon, I found via "The Good Search's" images! I think it is so fitting! This is the site where I found the ribbon & what the zipper head means!! (Careful... it's a touching story!!)

Some of this blog will be speculation or things I've received from an email... If it's fact, I'll back it up with a link. (Like I always try to!!)

Ok, I'll try not to bore you!

ACM = Arnold Chiari (pronounced KEY R EE) Malformation. It is basically a malformation of the brain. By definition from Wikipedia it occurs in children AND adults. HOWEVER, it is something you are born with!! Most of the time it's not diagnosed at all!! See this link at the World ACM Association site. (WACMA)

It is supposedly a rare condition... however, I have a feeling it's more common than they think... only because so many are afflicted with headaches & neck pain! HOWEVER, just because you have headaches & neck pain does NOT mean you have ACM.

It's found only by a CAT and / or MRI scan. Someone emailed me & said that doctors will just tell you that you have it & tell you it's nothing to worry about... because they would be obligated to teat you for it & to do so, may mean risky brain surgery. (Keep reading....) I feel this is the reason why it's classified as rare. But that is just speculation!!

Best way for me to describe ACM & how it feels is this "visual" statement... Imagine you have an orange and have a string in the middle of it hanging down... now visualize that orange sitting on top of a soda pop bottle & imagine trying to pulling it down through the bottle with the string. Can you "see" how squeezed it is in the neck of the bottle. Well, that's what an ACM patient's brain is doing!! Imagine now, how that would feel.

Ok, here, I found a picture to give it a little more clarification...

Do you see how the brain stem / cerebellum is so far down??

Another thing is... I think that my Hypothyroidism is related some how to this! As my sister put it... it's no doubt, because the pituitary gland is probably being "smooshed"! Also, some emails I've received said the New York ACM Institute has mentioend there may be a connection!!

Now, how does someone cope with such an ordeal?? Well there are several alleviation tactics.

If it's bad enough, then there is surgery... Yes, brain surgery. Decompression surgery to be more specific.

I, for one, do not want to have to go through this! It's risky to say the least! Not to mention it's not a cure, like some surgeries!!

Some people have gone through multiple decompression surgeries, with little or no success! Then there are those who have had tremendous outcomes that they are able to lead a normal life! (I get this from the 2 groups I belong to here in Yahoo 360 land... & some of the stories I've read via research!) The one with the picture of the guy with a tattoo on his head is a great group!!!

If you want more information, the WACMA site has a lot! So does the New York ACM Institute site.

Or you can, use your favorite search engine & type in: Arnold Chiari Malformation... or just Chiari. You'll be amazed, as I was, of all the information on this so called "rare disease".

Now you know why I am saying I'm exhausted all the time... or if I say I am having a bad "ACM" day!! It's a medical condition! I'm just glad to finally know why I am the way I am!!!

Now, if I can just get my hubby to realize that I am not faking or "acting" to get out of ... whatever... then life will be much smoother!! (Maybe I should print out the graphic above!!)

Now, I have a question for you... but I am not going to put it in a poll, because I'd like you to leave your comment in detail...

If I were to write a book about this & how it's affected me, would it be something you would buy and/ or recommend? I would write it in the same way I write my blogs... as if I am "talking" directly to you... I guess that's the broadcaster in me!

So, did I bore you? (Ok, so that's TWO questions... forgive me!)