Boo Hoo Sue....

I would prefer the title of this post be woo hoo Sue...but, it's not.  Ugh...such a rough time it has been.  


There are two different types of "scared" for me these days.  


One is the way my body feels when all the worst symptoms converge at the same time.  It is such an eerie, freaky and scary feeling.  What goes on in my body at these times is pretty much impossible to put in to words.  I have these spells several times per week...it scares me every time..I'll never get use to it.


The other, much less frequent "scared" is a different story.  Maybe twice a year, I'll step back and take a good, hard look at all that is going on with me physically. It scares me to no end.  I've been so worried and fretting for the past few days.  Too much is happening.  I was talking to my friend the other day and she wanted to know what exactly is going on.  It is such a long and winding road trying to explain my different conditions and symptoms.  When I was going down the laundry list, it started freaking me out, almost like I was hearing it all for the first time.  My stomach has been tied up in knots.


I was supposed to get the Barrett's biopsy results last Wednesday. After several phone calls, it looks like I will get the results Monday. I really need to cross that off of my worry list.  This week, I should also get the results for the Cushings test.  


On Tuesday, I have an appointment with my neurologist in Miami.  Unfortunately, I'll have to go myself and that makes me nervous these days.  **anyone that knows my mom, don't tell her about this**  Anyway, we are going to discuss how to proceed with the issue of the elevated csf pressure around my brain.  While I am with him, we have other issues I need to sort out and discuss.  I have my list ready to go.


When it was getting close to dinner time tonight, I felt STRONGLY that I had to bust this joint!!  I wish I could literally knock down the walls.  Having been so sick, and still very sick today, I knew it was not a day to leave the house.  Regardless, I had the choice of staying safely in bed, or getting myself together and take a leap of faith.  We decided to go to Big Bear...such a great place...and close to home.  


Like every time I leave, just getting myself "did" is enough to put me immediately back in bed. If I say so myself, it was a better "did" than normal..can I hear a woo hoo????


When the waitress came to take our drink orders, I really wanted a drink-drink.  Initially, I ordered a drink-drink and water with lemon.  In a matter of minutes, I was diving really bad.  Luckily Jimmy got a hold of the waitress and she cancelled the drink-drink order :(...If anyone could use a drink-drink, it's, me-me.  I was going down so fast.  I had entire body tremors, my brain was tanking and I felt like I was melting from the inside out.  I was thinking we had to leave, then everything turned around in a matter of maybe ten minutes.  That has never happened before.  When it hits, I have to leave immediately.  I was so shocked that I improved enough to stay.


Just as I suspected, when we were leaving Big Bear, I couldn't wait to get home and in bed.  I'm so happy we went and surprised that I was able to ride it out to the end.  As usual, my desperation to leave the house is replaced with desperation to get back to it, within an  hour.


My anxiety is getting the best of me these days.  I purposely didn't bring this up at dinner, because I knew I would end up in a pile of tears. I haven't brought up my fears to Jimmy yet.  The way this usually plays out, is that I hold it in as long as possible...doing my best to avoid a meltdown.  The day will come, probably this week, when I'll have to let it all out to Jimmy and cry...and cry...then get over it.  Hopefully, this second version of my "scared" won't rear its ugly head for another six months.  


I'm still playing Words With Friends.  I really hate using the expression "passing the time" these days.  If I were a well person, I would play to pass the time before or between doing things.  For me, this is the thing....but, it does pass the time.  I am playing with my daughter-in-law, Laura, which is always fun.  Also, I am playing with an old friend from grade/high school, PJ.  He is so funny.  I cannot believe how addicted he is.  So many times, I say to myself "this is the last play, then I'm telling him I HAVE to stop"....but, the alerts keep coming like planes lined up on a runway.  I give it all I got for as long as I can possibly hold out.  Anyway, PJ cracks me up!  I'm also playing a woman that was randomly picked, through Words With Friends.  I have to say, she is my toughest competition....which is really fun....and, it passes the time.


Before writing this post, I was in bed, tossing, turning and crying....and tossing, turning, worrying.  I thought that I would come on and unload.  Surprisingly, I'm feeling a little better....didn't expect that...Woo Hoo!