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

[tinasmom]

I am so very happy that you are going!! Everything will fall into place and things will go just fine. Looking forward to your updates while you are there.

[brain]

TO TRANSLATE MY POST:

*sigh*

To explain it all:

Everything was set up and arranged for me to go, but there
were transportation issues that were going unresolved.

Moreover, my mother decided to pitch in and gave me some
money to cover the expenses because CC had exhausted
every option out there, for there were no Agencies or any
as sistance available that would help me with the transportation
and since I'm also under Medicaid, I qualify for the Medicaid
transportation services in my State ~ however, never having
used their services before, I just was not able to get a hold of
them at all!

Because of lack of transportation being the issue, CC canceled
it due to health and safety issues, and left it on my answering
machine while my mother took me to the store so I can pick up
some small stuff for the short trip to CC, and upon our arrival
back - we get this message. My son and my mom were very
upset, with my son being furious!

While I was trying to get a hold of CC, my mom had said she
would GO with me, since they stated they did not want me
traveling alone - CC never gave me the opportunity or chance
to respond at all to get that resolved. It wasn't a fair game there
considering my tickets are NOW non-refundable and everything
had all been set up and all neighbors had been alerted and I
had just gotten food and everything for my son during my
departure so he can handle himself while I'm gone (he was in
a very bad MVA accident so the neighbors will be helping him
during my absence). My son went out to give out this news.

I spent hours trying to get through CC and couldn't, ended up
phoning my Primary's Office to relay the news before they closed,
and they were very surprised by this sudden "last minute cancellation"
and I'm leaving Monday - and this was a Friday, so while I still had
time - pressure was on to call them back and get this straightened
up and keep that appointment time.

Finally I got through CC, and explained it to them; it wasn't a
problem with me not going by myself but it was absurd that they
canceled the last minute when I have now a non-refundable
Greyhound Bus Tickets, and my mom would go with me. And why
they didn't give me any opportunity to allow me a chance to ask
my mother to join along on the Bus if they didn't want me to go
alone and while they checked their computer it just stated it was
canceled but it didn't state WHY it was canceled - they had to get
a hold of the office ~ and then after she had explained to them
that my mother is going with me, my appointment was reinstated
back to where it originally was.

However - this did cause some NEW issues on my end. My mother
will NOT travel in the DARK! My Departure on Monday is in late
afternoon and I do not get to Ft. Lauderdale until after Midnight on
the 18th - and she wanted the earliest Bus OUT - moreover, because
we already had rapport with the Terminal Manager here, she had no
problems in making that adjustment (since my tickets have to be fixed
anyway due to CC error when they had me being sent to the Miami
Terminal and not the Ft. Lauderdale Terminal). So I will be departing
very early Monday morning instead of Monday late afternoon.

Since my mom is an elderly person, she is wanting me to find some
motels / hotels near the CC and she's a Triple A member so it's not
a problem here - she can't handle me very well when I have seizures
so she wants to be able to get CC on the line if I have one out of
control. (But I doubt that will happen, because my son has told her
just send me to bed and I will be out cold, but that isn't her fear, her
fear is those seizures at nights is when I have the problem, she already
knows what has been going on because of what the Epileptologist and
Techs and Nurses have been telling her during both video EEG's before at
the Hospital when I was there the first time around and how it scares
them, and the Epileptologist himself had already said several times
over that I needed brain surgery - so it's scary to her. And she's seen
the seizures many times on the EEG - both the Techs and Epileptologist
had shown her while I was asleep, although they were small ones, but
the Epileptologist wanted the big ones - he had seen enough small ones.)

CC has shuttle service available for the motel/hotel nearby the Hospital,
and that is what my mom wants. (What my mom wants, she gets! I've
already been told that the CC Cafe food (Hospital) is very good (Hospital
Food is cheaper than Restaurant! *laughs* I know, because when I used
to drive, sometimes we (my family) when I used to drive, we would head
to my Hospital (where I was born) and EAT THERE! The food there is that
good and cheap! Or drive down where my dad worked - before he retired
and ate there at the Veteran's Hospital at the Mess Hall (they don't call them
Cafeterias) and it was even better! *laughing*)

~~~~~~~~

Having said that - I was completely frazzled after having freaked out!
My mom was disgusted, hurt, and upset more than she was angry, but
I cannot explain how furious my son was during that time span. I did
have my house full of neighbors here ... all of them were concerned,
that answering machine must had been played dozens of times! They
were MAD and that was all they were talking about how absurd it was
without giving any opportunities to discuss any other options!

Everyone was relieved to finally learn that it was settled, but I was
beginning to be brain-fried. So much stress had been imposed upon
me; I had a hard enough time trying to get everything in order just
for a few days and I still have a few final touches to put up (my son
has hideous memory and I have to put signs up, and yet, I have signs
up and my son still forgets!) and now I have to do additional things
on top of it and it just tripped me off where my son had to put me to
bed and I was out until he heard me what he thought I might had
been seizing around 8 and then when he turned the light on and saw
I hadn't even taken my afternoon or PM anti-epileptic drugs (because of CC) -
he went into a panic!

Because we have 2 ARNP's here (one's retired, the other is Semi-
Retired) he phoned them, and they both were over here quickly
and told him give them all (both the afternoon and PM meds)
and they had to wake me up and I took it but I don't ever remember
even taking any, because I went right back to sleep, and they stayed
awhile to monitor me.

I just woke up before 1:50 AM.

*sigh*

My son told me it was stressed induced seizure that triggered it all is
what the Nurses had reported, and they called it in to report it so it
could be documented.

I'm pretty sore right now, all my muscles ache, not sure what all
happened because I don't remember it but my son told me I had
went online, and I *groaned* and I had to figure out where I went
and he said I was only on for a short time before he pulled me
away from the computer and had his girl log me off and shut it down.

[Kansas Educator]

Yay! It's almost time to go. Hope you are feeling relaxed and ready. Great results ahead!

[brain]

HELP!

I have no idea what I am doing here!
I just KNOW I am forgetting something!
I can't even find my own check-list, I
could blame it on the dog and say the
dog ate it but we don't even own a dog!



My son and his "baby girl" let me sleep-in
because they said I had a rough night. And
I'm not all in sync. My neighbor who came
over to review everything before I departed
early tomorrow morning had difficulties in
understanding me because my speech was
slurring on and off. *sigh*

She knows my son's on new meds (he's allergic
to the other one and his Ortho-Surgeon has him
on this new one that isn't 'exactly agreeing'
with him) so he's somewhat lethargic - not as
in drowsy, but as in sick.

Then this "Cold Wave" dashed in, is what
tripped me off for I cannot tolerate this
Hot - Cold - Hot - Cold changes so suddenly.
That very well may be self-explanatory as
why seizures are so high in that time of the
year (as my area is prone to this type of sudden
climate changes from 90s to 50s so quickly, blink,
and you've become a bikini looker to a choosen
frozen instantly). Only here can you never know
if you'll be celebrating Christmas wearing tank
top and shorts or bundled up like an snow hiker
scaling Mtn. Everest sans the snow and ice!

Laugh if you must, but I am shivering and it's
only 70 and it's going to drop ~ and I'm bundled
up!


This sunbird ain't made for the cold, but rather
for BBQ and fishin'!

:-P

I'd rather deck my BBQ grill and boats with boughs
and holly and dashing through the waters with a
one (Johnson) Sea Horse (outboard) Ski, and crashing
through the waves ...

:-/


I clearly do not understand how the massive population
of the United States of America can tolerate or stand
residing up there, called N-O-R-T-H ... BRRRRRRRRRRR!

:::: shivers ::::::

(trying to relax, regain humor, self control, not
lose presence of mind, obtain self sanity, everything
is going to be perfectly fine ... I am fine, yes, I am
fine - it's everyone else that isn't! Aha! That's the
answer ... {talking to self})

[Kansas Educator]

Hey I understand the thing about freezing in Florida. We lived in Tampa for almost 4 years. I remember being chillled clear through to the bone when a cold front came in. Cold and humidity seem to make it so much worse. We live in Kansas now but the Florida cold is real.

Praying for you and thinking about you -- anxious for the cc updates!

Roxie

[brain]

Up.
Ready.
Had coffee - but it wasn't Starbucks!



(Oh well)

Had to put my wireless back on high
performance so I can get moving here.

Still haven't remembered the danged
thing that I am supposed to remember!
Wahh!

Was up early because I am not sure if
I had a seizure in my sleep (?) for my
body is hurting like heck, sore muscles
all over and my pj's were damp in sweat
and my hair was damp. Don't know what
happened, but woke up very confused
after 4 AM having no idea what or where
I was until Kim heard me wandering around
the house. I am sore! She told me to go
back to bed, but I've got this headache,
and opt to take a shower anyway and
gradually it all went away but the hot
water shower did help on the muscles...

However, when I went outside - OH BABY,
it's COLD outside! BRRRRRRRRRRR! I had
to turn the heater on! It must be about in
the 50s! Dang it! It was in the 70s yesterday!
*sigh*

I am in that hideous season again that I
loathe so much that it trips it off, and the
chances is - that is most likely what happened.
I didn't have the heater on, and I was shivering,
wasn't even dressed, didn't even think it was
going to be THAT cold down here!

Hey ... I think I'm going to move to Florida
where it's warmer ...

Oh wait ... I live in Florida!
*smirks*

Well - got to run - and get this wireless on the
wireless "off" mode so I can 'entertain' myself
on the bus probably playing some of those old
games that doesn't drain the batteries out, for
I just found out my other back-up cell is shot
(my wireless is very old and the geek that I am
just can't leave things well enough alone, always
having to tweak and modify and upgrade/update
everything and what "they said" could not be done,
has been accomplished - I've managed to turn a
Win 98 wireless into a Win Vista Premium! *grins*)

You won't be seeing me post again until I'm in
Weston, Florida! (Well, at least it will be warmer
down there .... I hope!)

[Nancy]

Prayers and love - lots of both - sent with you

[Bernard]

fear is the mind killer

Have a safe journey and good luck at the CC!

[josieb]

Wishing you all the best of luck!!!

[brain]

Hello from Weston, Florida!

AND MY GOSH! CCF is Mega-HUGE!
::: smacks head :::

One can actually get LOST in there!
We arrived late due to bad traffic, but
since I'm restricted on this internet, my
postings will be limited, will be back at
the CCF tomorrow, and y'all will hear
how it all went from there ...

For now - it's shower and bed time for
me!

Niters everyone!

[Bernard]

Great news that you made it there OK.

[Kathie]

I've been thinking about you for days now, wish I could have helped you out on your journey! So glad your there and I wish you all the best!!! You certainly deserve it!
Kathie

[Meetz1064]

YOU MADE IT!!!!!!!!!!!!!

Hot diggity dog!!!!!!

WOOOOOOHOOOOOOOOO!!!!!!!!!!!!!

[Birdbomb]

Give em Hell Harry!







watch out for trolls

[joan]

I hope you feel better today. I hope your trip goes well and is successful

joan*

[brain]

Greetings from Weston, Florida!

Back from Cleveland Clinic - and finally getting to the
bottom line of everything and move over y'all, and pass
the meds feedbag! Because it's more anti-epileptic drugs ...
And now it's "Hello Lamictal" ... to the feedbag!

So what did CCF find? It's clear, Epilepsy, no question or
doubts about it. I didn't even know I had seizures last night
when my mom reported it (I was in a snooze cruise and she had
actually witnessed it and told the Doctor about it and when she
questioned my mom even to a point of how long did it last, what
all happened, etc; and as for me - I was out, never knew about it
but it would explain clearly why I woke up with a sore and aching
muscles! *sigh*), but having gone over the reports, seeing the
old reports, EEG reports, Doctor's notes, etc - it was clear. Then
going over the anti-epileptic drug list of what I had been on and what happened
when I was on them, then she asked me if I ever been on this or
that or that ... and a list was growing, and no, but a couple of
them in the past some Neurologists had made mention of putting me
on a couple of them but retreated but when she asked why? I don't
know why, I told her to ask them!

I was a total nervous wreck in there, but I think the Doctor knew
it and sensed it easily! Call it the "jitterbugs" if you want, but
I was totally beside myself! *blush* I thought I had blown everything,
for I kept telling myself I am not going to be stiff like an ice cube
in there and I am going to be fine! Yeah right, I was neither in or
out. *laughing*

I'm looking forward to go home - but as soon as I get the photos
developed, I'll post the link and y'all be able to see it. But really
this Doctor, Dr. Adriana Rodriquez, is a real sweetheart, she even
asked the Interpreter for some signs, so she could learn some simple
sign language. I did get lost a couple of times and confused; but I
think I covered the bases, and my mom will remind me of everything.

Tomorrow is HOME BOUND - then headwards to the Pharmacy to start
this Lammy-O-Cell to the feedbag, and be on the titration of that!
So that will be 3 anti-epileptic drugs plus the Folic Acid! (Not unusual for me
though, the highest I've been on had been 5 anti-convulsants, but
that was ages ago when dinosaurs roamed the earth - *laughing*)

C'yall - when I get home!




PS: CLEVELAND CLINIC HOSPITAL ROCKS!

[joan]

Great news! Safe trip home. My kids both on lamictal ... if you can tolerate it, it seems to work well.

joan*

[Bernard]

I'm glad you were able to make the trip and see the doctor. I hope it leads to improved seizure control for you.

[josieb]

Sharon: It's good to hear that your visit at Cleveland Clinic went so well. Hopefully the Lamictal will help you. Wishing you and your family the best.
Sincerely,
Josie

[Kansas Educator]

So glad you're feeling good about your visit to CC. I hope and pray that it's the answers you've been seeking and that only good things are ahead for you!