This is not a mirage...

Hi ya! I know it's been awhile... & a lot has happened (ok, not a lot) since last I blogged.

There's good & bad news... well, not that bad.

Anyway, start off with the not so good news... Let me back up a little, in case you didn't see my "quick note" about my surgery...

I went up to The Cleveland Clinic (TCC) a week ago for the pre-ops & all was going well & we were on our way home. In fact, we (my mom & I) were at our exit on the highway, when I got the call from Dr. Di's nurse. All my blood work came back fine... however, the urine analysis didn't. Seems I had a bladder infection. The results were not slight, it was obvious.

This surprised me because I had no symptoms that I could think of... but then she mentioned frequency... yep, I had that... so much I was going to ask Dr. Di if it was a sign of things getting worse with my Chiari, but forgot.

Now that was answered... but not the way I had hoped. Since I had an infection they had to cancel the surgery for the next day... and they called me in some antibiotics. You would think that they could reschedule for this week... but nope, Dr. Di is completely booked. So, the nurse said she'd talk with him to see if there's a day he could work me in... & that we have 4 weeks for the results of all the rest to still be valid. I'd just need to get another urine test within a week before the rescheduled date.

After several calls & messages left, I finally got a call yesterday from the nurse again to say that she's still trying to find a way to get me in within the 4 weeks. However, it's not looking good. She said she's trying to see if some other doctors would be off in one of those days so that a room would be open for Dr. Di... but she's still waiting to hear back.

Then she said that the 1st open slot she has at the moment is August 20th. ARRRRGGGGHHHH... I may have to wait THREE MORE MONTHS... Why can't I have my original date of June 25th? Well, seems Dr. Di is not going to be there that day! UGH!!!

I told her that if someone else ends up canceling or something to give me a call. We can drop everything & be up there. If not, she has me penciled in for August 20th. Yes, that means I'd have to go through all their pre-ops again! *sighs* ... Yes, I will be forceful and ask that it be done a week ahead so that we don't end up in the same situation.

When I told her when the next person who is turned away because of something similar, she said that won't happen because they're tested a week before. I told her that was what was supposed to happen to me too, but the scheduling department didn't get me in until the day before. I said again, we'll drop everything to get me up there if a slot opens.

So, that's where we stand as far as that. It's not bad bad news... but it's not good either. Waiting another 3 months is not going to be fun at all... especially since my bad days are getting to be worse... & have out weighed the good days for a long time now.

It's all just a pain in the ... neck & head (literally) & I don't have to worry that this is terminal or anything like that. I've lived with it for this long, I guess another 3 months isn't going to matter... It does give me more time to deal with Social Security.

Yeah, that's still up in the air. & That's another long story that I'd rather not get into at the moment. Suffice to say, I'm still waiting!

Now... let's move on to the good news!!! Hubby & I are moving... WOO HOO!! Next weekend if all goes well (& if I'm not going to be at TCC) we should be in our new home.

My hubby's best bud is moving to Tennessee & they knew that we wanted out of our house we're in now. (We live in the city limits & hate it!) So, they worked it out that we'll rent from them... and we'll be paying the same amount we have for our mortgage. Which is great!

It's a house on 5 acres of land & it's not out in the country where we're miles from everything. The house it's self is a little small, but will be quite manageable for us & our 2 dogs.

This will be wonderful for Coleman & Sunny, because they'll be able to get out & run. There's an invisible fence so, once they're "trained" we'll be able to let them out without leashes. Being that Coleman is a Border Collie, it's going to be great for him to get that exercise.

I'll miss a few things from this house... one being that the big kitchen... but then again, we won't have space to junk it up like it is now. LOL! ... The other thing is my dutch doors. (The kind that is split in the middle so you can just open the top half.) That we can always get later... I think. Do they even still make them?

Oh & we're going to "inherit" 2 barn cats too, named Tiger & Prince. I guess they're smart kitties too. They will lay down just out of the line of the invisible fence when the dogs are out... so, that'll be interesting to see how Coleman & Sunny will deal with the fact they can't really chase them.

What's going to be tough for us is that we're going to have to do a "short sale" for our house... or just turn it over to the lender. Mainly because the property around here is just not selling & we're still trying to deal with being behind while Hubby was laid off for over a year. It's not going to hurt me, credit wise, because I've never had good credit... it's just going to be a big hit for Hubby's credit if we can't get it sold for the amount we owe... but we're not too worried since we have a new home now... which I'm looking forward to!!!

Looking forward to the peace & quiet... central air... & a fireplace (even though it's gas!)... & room for the doggies to run... & outside cats! (I love cats, but can't deal with the litter boxes & etc... so, it's going to be great!)

Yes, I'll post pictures soon as I can... just keep in mind that it maybe awhile.

Other than that... everything else is still the same around here. Take care & talk with ya later!

I totally forgot to post here... my surgery has been postponed... (will explain below)

Hey all... tomorrow night at 8p (Eastern) the show HOUSE is going to feature the very invisible disease that I suffer from, Chiari Malformation. HOUSE is on the Fox Network. So, please tune in & tell your friends too... awareness is much needed for this! Thank you! :)

My surgery has been moved up... Now it's May 14th!!!

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! ~

Earthquake in Baja felt all the way in Phoenix! (cont. below)

Was it a morning like this???

One of the downsides to not being able to drive on my own, is not being able to attend church as regularly as I wish. Especially on special days like today.

(Before I continue, let me preface this blog as... Yes, this entry is of a Christian nature. I do not apologize for posting it... and don't you apologize (nor even make mention) if you don't wish to read it. That is between you & God... (whether you believe or not!) Thank you.)

Because my hubby goes in much earlier than the start of the service, (he's one of the "sound technicians" for our church's Praise Band), I am left with the opportunity to have peaceful & quite time, to be able to worship on my own. And today was no exception... No, take that back... today the exception is that, not only is it a beautiful day (as most Easters have been in the past)... but it's also the day that we set aside to remember in prayer; praise; and worship Thee One who was crucified for our sins and rose from the dead three days later!!!

Yes, we are to remember that everyday... today is just the day, that as Christians, we celebrate it with gusto. Just like we celebrate His birth on Christmas Day!!

Anyway, I felt led today to share with you how I spent my morning in my personal quiet time with God...

Let me back up just a little... I have been reading the New Living Translation (NLT) Bible that is set up to read in one year. Each day they provide you with a passage from the Old and New Testaments... and one from Psalms & Proverbs.

Because I get bored (and sometimes confused) with the way it's set up... so, I had been reading just the Old Testament passages for several days / weeks. This week, however, I felt the need to start reading the New & to read up to the Easter story. ~ Yesterday I read all the way through to Jesus' crucifixion. (Only in the book of Matthew.)

Today, I felt as if I needed to read from my regular New International Version (NIV)... not just Matthew, but also all the versions (Mark, Luke, John, Acts & 1st Corinthians) of Christ's Resurrection.

I also knew, before I went to sleep, that today I wanted to listen to some of my favorite Easter songs. And here is where you can participate as well...

After praying & then reading the scriptures, my 1st selection was "Was it a morning like this." However, I came across a wonderful video of Sandi Patti's version of "Via Dolorosa". Intermingled with a recreation of when Jesus was carrying his cross, made it for a great start of my "worship" time. This particular one, I did not sing along... However, here are the lyrics in case you want to.

Moving on, I looked up the previously mentioned, "Was it a morning like this?"... & found it also by Sandi Patti. These are the lyrics to this song.

(Tell ya what... it sure was a beautiful morning here! Makes me ever so more thankful of God's awesome handiwork!!!)

Then I wanted to not only listen to but sing along to "My Redeemer Lives" (by Hillsong)... If you wish to do the same, (which I highly recommend because this is a very beautiful upbeat chorus), here are the words.

MY REDEEMER LIVES... AMEN!!!

I was going to add to this a little bit about what I did yesterday... however, I believe this one needs to stand alone. With that said...

No matter if you're a Believer or not... have a wonderful, safe, blessed & HAPPY EASTER!!!