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checking in!

Jun 28, 2009 - 9 comments

hi there everyone! My internet access is very come and go. More "go" than come.... I "borrow" neigbors...or go to cafe's that have free wifii.

The new job is going amazing! I love it there, the people are very great, the atmosphere calm and I enjoy what i am doing... it is a patient registration job in a large eye doc. clinic.... they can service anywhere from 30 to 350 patients in a day. I am one of three ladies in the front whose job is to get everyone checked in, insurance checked, and all paperwork scanned in and printed out for the doc's and techs in the back. Fun stuff!!

Healthwise, i am managing. Mom and I were joking the one day and I told mum how I just tell everyone and myself that everything is "ok" and how one day I was going to wake up in heaven and still be saying "it's ok everyone, I'm still ok!"....  

Honestly if I sit back and look things over, I'm doing pretty good right now. i'm walking without a cane now, usually safely. I use my AFO's every day and they help me get around pretty normalish, and the other day I realized that I am doing pretty good walking in comparison to 3 or 4 months ago and I'm really thankful for the improvement there. There are other neurological symptoms that are new, and I realize at some point they will need to be checked out but I am doing the whole ostrich with the head in the sand for this moment... I know it's not the healthiest approach.... but you can only scold me if you yourself haven't done this at some point or another! I am going Wednesday for more heart tests to figure out the irregular rythym/high heart rate/ high blood pressure problems and I'm just trying to work on one thing at a time and I decided my heart was the most important thing at the moment.

have a great sunny Sunday!!

Journey through Limbo-Land (POEM) by Sunnytoday

May 10, 2009 - 5 comments



limbo land







I’ve walked through many Doctor’s halls
Filled out papers, answered questions and
Stared at strangely decorated Specialist’s walls
And here, I find myself in Limbo-Land

I’ve been asked to walk in a straight line
Stand without falling and squeeze my hand
To touch my finger to my nose and count to nine
And so I’ve laughed in Limbo-Land

I’ve had vials upon vials of blood drawn
As they run at least a third of tests known to man
You’d think by now a diagnosis would be foregone
But still I’m here, crying in Limbo-Land

So they moved on; poked and prodded some more
And looked back at what they had scanned
I felt like screaming, “What are you waiting for?”
As I felt myself sinking further into Limbo-Land

I wanted to have a life; it was full hopes and dreams
Here I am sick; this is not at all what was planned!
Doctor’s say, “Come back in 6 months”, confused it seems
And now I have found a home in Limbo-Land

But limbo is a state of uncertainty or a transitional place
This is it’s definition and I think I’m beginning to understand
This may be my future and which I’m going to embrace
But I think I’m going to have to fight to get out of Limbo-Land

We all deserve answers, no matter how hard they may appear
This brings treatment, acceptance, or hope of heaven close at hand
Until then, I will embrace my future and want everyone to hear
That I have found peace on my journey in Limbo-Land

Author- J.M.W. ~Sunnytoday~

I found this peom I had written in December of 2008, and I had to think a bit. It was inspired by the term "Limbo-Land" that we often use here on the forum. I didn't realize how much I would go through in the next months after I wrote this and I thought at that point a dianogis was around the corner... and I know that life has a LOT to throw at me yet. But this rings so true now that I realize a diagnosis for me is not coming any time soon. Somehow through it all- I have found peace and that is what has carried me through. And I want other's to know that it's possible to fight for a diagnosis and yet have peace with the way you have been created. You are perfect in your imperfections. You are loved. You have a purpose. Never give up!

latest entry to my time-line

Feb 24, 2009 - 0 comments

February 9th, 2009
Beginning trouble with balance and lifting feet correctly to walk, can hear my feet dragging more, and stubbing my feet and rolling them under on the floor.

February 23rd, 2009
Feet increasingly difficult to lift off floor “feels like I’m walking in concrete”.

Have to drag feet even when wearing AFO’s, and cannot lift foot off floor when walking creating a wide unstable walk that looks just like my walk before my AFO's and when i had my last bad bout of symptoms in the summer 2008.

Balance also affected, tipping over constantly when not in motion.

Head now wobbles/jerking back and forth such as the “yes” motion, this is worst/continous and most noticeable when eyes are closed such as for mealtime prayer.

Muscles in jaw shake when trying to sing, or hold a thermometer in mouth or when talking for very long.

In the evening when i am tired I keep blanking out and forgetting what's happening or what i was just saying repeatedly.  

"Wish List"

Sep 27, 2008 - 4 comments

                                                             Grow Roses
                                                             Visit Europe
                                                          Find a sundress
                                                         Memorize a poem         (Wrote a poem, Dec. 2008)
                                                         Dance in the rain              ( fDone, Fall, 2008)
                                                Go kayaking down a Fl. river
                                              Fill a third book with postcards
                                        Visit Colorado, Arizona, and Montana  
                                          Create and publish my own recipe    (Done, dessert &, white pizza, & chicken recipes Fall, 2008)
                                                  Play on a real grand piano
                                                    Host a garden party
                                                     Ride a snowmobile
                                                          Wear make-up                (Eye Shadow 2008)
                                                    Learn how to dance               (The electric slide, New Years Eve 2008, hilarious)
                                                     Be a bridesmaid
                                                        Laugh more                    ( I'm starting to smile more)
                                                         Find a job
                                                     Decorate a cake
                                                   Design a web page                 (Done, Fall 2008, weebly)
                                                Become a photographer
                                               Have my own apartment
                                          Own a real mirror in my room
                                                  Make soy-ice cream
                                           Splash in the Pacific Ocean
                                            Go sledding or inter-tubing
                                      See a real pro sports game in person
                                                Experience my first kiss
                                                     Volunteer again
                                                 Wear contacts
                                                      Own a car                                   (Done-August 2008, yellow Mazda Protege 5)

Do you have one? A "to-do list" or a "dream List" you know, things you would like to do, or dream of doing but haven't yet....they are somewhere in your mind floating about as dreams or ideas but not really goals or plans and you have never really wrote them down, looked them over and said..."yeah, I'm going to do this." So, here's mine..... what's yours?

(ok, so some of mine ARE definite goals.... but well, others are just hopes and dreams, so don't be critical ok) :) :) :)