Hello Cleveland Clinic! Back from CCF - Photos Are Up!

[Bee91]

I'm going to the

Cleveland Clinic Hospital - Weston, Florida

ahh...what the heck...that is deceitful...

well then. nevermind.

[Kansas Educator]

Sharon,

Thank you for sharing your story. I will hold you close in my prayers with a specific prayer that CC will have an answer for you. You are an awesome encouraging person and we are blessed to have you here for us. We'll all be anxiously awaiting your appointment right along with you.

Roxie

[stilldancing_98]

Oh, I wish I were going with you. Keep us updated. Pleeeeaaaassseee. They might have private transportation for you. I have that from my hospital.Check it out.

[brain]

I am going to bring my wireless laptop with
me ... so I can pick on y'all!

*grins*

I plan to also bring a camera so I will be taking
pics too ...

I know Hospital Cafe are cheaper to eat there,
so as soon as the Metro Buses run if I can't
get the Medicaid Transportation or anything
else going - I'll hit up on the Bus early, and
then get to the Hospital - and snoop around,
and of course my son - he wants me to get
something while I'm down there, and I might
just get a "CC" coffee mug if they have them!

*laughs*

As if I need more coffee mugs?

*groans*



So I'll post some pics as soon as they're developed.
I can't bring the digital camera (my neighbor gave
it to me and it's really a piece of junk and you have
to plug it in, since it doesn't hold the batteries very
well and besides, even if I taped it in, I could only
managed to snap maybe 2 or if I'm lucky, 3 pics
before it eats batteries up! *sigh*).

I am hoping and praying for a lovely warm weather
down there, right now - it's too danged freaking
COLD for me, I've got my space heater on (I KNOW,
GO AHEAD - LAUGH AT ME! But it's 69* outside,
and I'm dressed like it's in the 40s! BRRRR!)

And I'm not that far away - being only NW from
Miami area - if I can remember, it's like a 4.75 hour
drive on the highway, I just never "timed" it, having
been back and forth so many times throughout the
decades when I used to drive.

I know it sounds "weird", if you looked on the map,
that "Jacksonville" would be 'closer', but it's actually
a longer drive, about a 6.5 hour drive!

::: smacks head :::

They need to design a better map! It's too deceptive
looking thing! And it's even worse if you try to figure
out if you wanted to drive from Tampa Bay Region to
Florida Keys and think - "Oh boy, it's not going to take
that long..." (THINK AGAIN KIDDO! You're in for a big
surprise!)

[brain]

Getting nervous now. Had spoken with my Primary
earlier this morning so far:

• Greyhound Tickets - check
• Camera - check
• Triple A's items they provided me - check
• Medical Records & Info - sent
• Doctor's Rapport - done
• Cleveland Clinic's Staff - been great!
• Confirmation - Received Yesterday (*glup*)
• Fingernails - still attached to fingers...
• Clothes - still questionable (have to monitor weather)
• Wireless Laptop - ready
• Desktop Computer - not ready (*laughing* - someone kick me to get that ready before I go, so my son's girl can check up on me from there)
• Seizures - I'd wished I could ship them down there and I'll stay home - "CC" can have them and not send it back! (That is a nice idea there! Why haven't I thought of this plan before?)
• Need to pull out the old "ancient historical records" - Someone kick my rear end!
• Need to type up a summary - Need another rear-end kick here!

Mind? I think I lost presence of mind, honest! I think
I will be frozen solid stiff when I arrive there!



Even more so, when I received the notification that they
are going to be doing testings there while I'm over there
and I'm not sure how they plan to cram all of that in such
a short span?

Right now I don't even know if I am coming or going!

(Can I make a U-Turn?)

[stilldancing_98]

But you will, you will. That is why you are going. who hoo! Teresa

[Kansas Educator]

they're really going to try to get to the bottom of things. I think that's really hopeful. We'll be anxious to hear how it goes!

Roxie

[seizures4ever]

I had to check in on you before I logged off. Sounds like you are getting it together! And we all have our encouragement "bags" packed to travel with you!
I agree with Teresa and Roxie, it does sound like they are taking your situation seriously and trying to go "full speed ahead" with testing to get to the bottom of things.

Thanks for keeping us updated! -Julie

[stilldancing_98]

Update us. We are still here rooting for you!.

[brain]

I'm going to get my desktop (this is where I am now
on) ready, and then work on the summary on the
MS Office....

Does anyone want to "Proxy" for me?

I'm a total wimp!

[steve]

My girl is typing this for me, I'm Steve, Sharon's (Brain) son. Mom is really nervous about Cleveland Clinic because she is going alone. I feel awful and worried because I can't go with her. My Doc had put me on full disability up to probably 6 months because of my broken arm from auto accident close to Halloween. I'm worried because my mom seizes more than she think she does. My girl and I see this and so does my grandma too. We are all concerned about her going by herself unsupervised. Grandma is going to make sure Greyhound understands this clearly and when they make those stop-overs, to keep an eye on her so she doesn't wander off. I am very scared for my mom. Grandma is still debating about going with my mom, she doesn't like the idea of her going by herself either. My girl and I are up now because mom had a seizure in her sleep again and was choking. And now she's waking up in a confused state. She's arguing with us that she didn't have a seizure but she did, we can tell easily. She slurs her words, gets all confused, slow to get moving, walks like a drunk and takes awhile for her to get orientated. This is really old news here, but we are worried about how or what she's going to do on the bus. So count us all nervous! I love my mom, but I am afraid someone is bound to mistaken her for something else and she would end up in some cop car in jail somewhere all because of those stupid seizures and she can't talk right when she has them.

I'm sorry mom, I just had to have Kimmy Bear post this, because I love you Mom! You need all the prayers!

Love you!
Steve

[Bernard]

Steve, is she taking/wearing any medic alert bracelet/jewelry?

I'm hoping for the best!

[brain]

Awww, my son's girl posted and I noticed he changed
his avatar! As you can see ... I finally had fixed the desktop!

*grins*

Unfortunately, I did have seizure early this AM, they told
me about it.

And yes Bernard - Steven bought me an Epilepsy Bracelet
which I wear on my ankle. I also have National and State
Epilepsy Foundation ID Cards in my Wallet alongside with
my Physicians.

It is Steven's idea for me to wear the EFA outfits when I go
down there and I will be wearing the EFA band as well.

Cleveland Clinic is still working with me via email; however, I
do understand their worries and concerns.

I have made up my mind, I am determined to get rid of this
hellish nightmare that has been torturing me for ages since
being born with it - it's time for it to be buried!



And no Funeral Services either!



I just need to overcome this timidness and shyness I have.
I am trying to picture this whole thing as another trip to a
church ministry as I've done before rather than a medical
trip (I used to use Greyhound sometimes for that purpose
when I didn't feel like driving - self-explanatory) which I am
so used to in the past, but it's been so long ago.

[Kansas Educator]

Ah Sharon. It's so sweet that your son is so concerned. You'll be just fine. This is meant to be and things will be fine.

Remember that lots of positive thoughts and prayers are going out for you while you are there and that we'll all be anxiously awaiting good news!

Roxie

[seizures4ever]

Sharon,

I understand your family's concerns, but I also understand your desire to get this beast off your back...you have carried it around too long!

A short story by Julie:

:: pause for your attention::

The joke in my family (and it is just that...nothing cruel towards me intended) is that I have to bring the "duct tape" anytime I leave home because "things are always falling off of me." And in the south, duct tape fixes everything! To put it bluntly, if it's not one thing, than it's another...there will always be something.

:: pause while you ponder what, if anything, that means to you::

So, take your CWE shirt, medical alert bracelet and cards, a roll of duct tape, and your determination...and kick some as* at CC!

Take care and stay safe. ((Big Hugs)) We're all thinking of you.
-Julie

[brain]

Cleveland Clinic has been by far absolutely
wonderful folks!

They've already got me hooked up with their
main Hospital (Ohio) and having my medical
records - they have me set up so that every-
thing I have is all customized so it's going to
take me forever to read up on all this stuff!
Geesh! Neurology, Cardiology, Mitochondrial,
Women's Issues, etc - and then Surgeries,
and there's WebChats, and so much more
all just specifically with what I have.

However, transportation is still being an issue,
but I did give them one option down there in
Weston, FL that they hadn't checked into, so
I should be hearing back from them.

Moreover, they're about to be in for another
surprise, for the battery of tests that my
Primary had done before sending me off to
"CC" - all of them were coming back normal,
except one just hadn't come back, so we just
assumed it was going to be normal and they
were just "backlogged". Too much time had
lapsed until I finally received a call - I have to
go in for a very special ultrasound, and I do
not even want to talk about it right now. I
have enough as is and I do not need another
one on the list!



But nonetheless, they are going to have to
alert "CC" about this. *sigh*

What's so awesome is - being in touch with the
CC in Florida and CC in Ohio - kind of cool! Whether
on phone but most of it all is via email correspondences.

(But I do get a lot of compliments about my sig-line)


"Vujà dé - the feeling you've
never been in here before!"

*laughing*

They love it and thinks it's cute!
And a couple of them have inquired about where
did that come from ...

The Story on that?

Well - The Neurologist (retired) who had done a lot
of my EEG runs (never was my Neurologist) used to
call me "Scatterbrained" (teasing but we knew each
other; my son calls him Grandpa Ne uro) - so he was
suspecting I had déjà vu and jamais vu with the Temporal
Lobe Epilepsy. And I said, "Uh Uh, I have Vujà dé!" And
he gave me this look, and said, "WHAT?" I then said it
again, "Vujà dé, the feeling that you've never been
in here before!" He *groaned* and shook his head.



Of course they were laughing when they heard it!

But as for me - I'm going in all different directions
and I'm NOT ready!

[steve]

I will kick Mom's butt if she backs off! Everyone is making sure she is going!

Mom - this is your son here, You are going to CC, that is an order!

[brain]

I am fazzled state! Ny mom take mee to the
store so mee get the stuff need four CC trip
on Monday and errand run we did back home
did we come back find machine answering left
to say that apointment was cancelled that I no
go because no want me go alone?

No fair, not chanece to evven let myy mother
spaek to her ask she go too she say yes go
with mme, so I caal back and haad hard time
getting through CCF frustarated I was call back
Piramary Dr Ofice and soruprise they were but
try aagain call back finnd out why not maek
quiet the no sense. Confosued I was!



Vinaly, I through got CC on fone talk to theem,
they check and not on compoter notes? Hodl I put
on they check, ok to go fi myy mom go wit me.

Brian al messsed up, all fazzled, ca'nt thank striaght.
Least me mom laeve early Modnay go CC erarly mom
no like dark.

Amlost taears me was in naeighbors get mad got newws
abaut it al in myy howuse wait but toook hours oto get
all fixed finally up fixed.

Staeressed out no neded it I not neded it brian all meseed
up. Sun got maddder thaan hack teell me beed ned I goo
now.



Bot CC ... hare I come!

[Meetz1064]

GO TO BED!!!!!!!!!! You obviously need to............LISTEN TO STEVE......PLEASE!!!!!!

[stilldancing_98]

It's ok . I know you just want to talk to somebody. It's ok. Just sit down and you will be ok. It gets scary for me to. Then you can sleep when you feel better. Slow down and take a breath. It is ok. Teresa