My encore performance.....

Well, today I had to go back to the University of Miami for my second of three visits for MRI's.  As much as I hated to ask my mother to take me, I just had to break down and ask her to bring me yesterday and today.  Jimmy is taking me on Monday.  Anyhoo, after reading my post about my sitting-ovation-worthy "Chicago" performance the last time I drove myself to Miami, my mother asked me to put the CD in.  She didn't have to ask twice ;0  And they call Jimmy a saint!!!!  It really does pump some temporary life in to me.  My mother said that it made her drive faster, I think that is the same as saying "BRAVO!!!"...isn't it????   I assume her accelerated speed was due to her foot tapping the gas pedal along with the "show"!....what a rush...I love me some Broadway :)...wonder if my mother feels the same way?!?  I have a feeling she might have a sudden interest in mimes....much like Ceal, Kathy & Erica :)

MRI's are very difficult for me the past few years.  When I lie down, I have to be on my side, or I am very uncomfortable. Others in my condition, seem to have the same issue.  Lying on the MRI, flat on my back, unable to move a muscle for over an hour is excruciating for my muscles and bones.  Yesterday, I took one Xanax and one Vicodin.  I was close to tears by the end.  Today, I upped the Xanax to two, along with one Vicodin.  I have to say, it helped.  When I go on Monday, I will be in the tube for approximately one and a half hours - UGH!!!!!  Looking forward to this round of tests to be over, although I am having a CT scan of my heart on Tuesday.  CT scans are much shorter and easier to take.

Last week I finally ordered new glasses.  I am at the point where I need them to see close and distances.  Today I picked them up....they look exactly like the glasses that come with the fake plastic nose and mustache....minus the nose and mustache! NO, I DON'T HAVE A MUSTACHE!!!!!   I'm what you would call a "looker"...meaning I can now see!  I never love the way I look - that would be imposerous - but it is so nice wearing glasses all the time and always being able to see.  I have progressive lenses.  The eye doctor said it can take as long as three weeks to get used to the lenses.  You should have seen me in the parking lot.  I thought that the lines painted on the asphalt were steps????  Yet, another humiliating moment to add to my Encyclopedia of Humiliations.

The good news is that I get to stay home tomorrow...that is unless I want to get some exercise walking up and down the steps in the Walmart parking lot. 

I want to add that Phil sets out on his second Coast Guard duty for two and half months tomorrow.  Even though he has been living in Charleston, I am really going to miss him even more, once he sets sail.  We all love you Phil and wish you an incredible experience. Bon Voyageeeeeee Coastie :)

Oooohh, I want to hit "publish", but my play list is playing "On My Own" from Les Mis....aaaaaahhhhhhh...I swear I sound just like her....I'm such a dreamer....did I just say that out loud???? I really do sound like her :)

Hot Off The Press...an article by Peg

It is 2:00 in the afternoon....very rare for me not to be writing in the middle of the night.  Like all of my posts, I'll start writing, then decide whether to delete or not.  I think I may have deleted one or two since I began.  Today feels off, so this may not make it to "print"!

I guess the best word to describe how I have been feeling lately would be "unsettled".  In my previous post, I said that I felt that I have finally accepted my issues.  Luckily, I do still feel that this unexpected transformation is really taking place.  Hoping it continues...

In spite of this, I still feel very unsettled.  There are so many missing fragments to my life.  I'm sure you all remember the old Fisher Price toy...the little wooden work bench with the round colored pegs that you hammer to push through.  Well, I cannot tell you how many times I have felt that hammering down of the peg, until it is flush with the wood, as the perfect visual to describe how I feel about my losses....BTW, I am the red peg :)  It's like, ugh, more gone...ugh, more gone...ugh, more gone...gasp...nothing's left.  Putting the physical issues aside, there are so many unpleasant mental/emotional changes,  I feel such a loss of spirit and self.  It is an awful hollow feeling....like the shell of a person with no depth, just vacant....actually I picture my brain MRI to show a crummy motel with a blinking vacancy sign...We'll leave the light on fer 'ya....

I cannot allow this to happen any longer, not without a fight. Obviously, I cannot be the old me physically, but damn it, I have to get back to my old spirit and personality.  I am desperate to re-invent myself, using the tools I am left with.  Here's analogy for 'ya...lucky you.... picture a baker who has made a specific cake..signature cake.. for most of his ..her life.  Suddenly,  her ingredients are no longer available and never will be.  But, this is what the baker does....she has to take unrelated ingredients and keep the bakery up and running.  Well, I want my spirit to be up and running again.  Like the baker, I have ridiculously limited resources....but, I don't believe it takes me out of the race.

At this point, for me to prevent total insanity (hey...I can hear you...)... I HAVE to rework my life.  It HAS to have some meaning.  I WANT to feel like I am contributing to life, the world, anyone/everyone.  

So many have written beautiful lengthy letters, telling me to pursue writing in some form.  Some have mentioned a column in the newspaper, recurring article in a magazine or even writing a book.  I would absolutely love doing any of these things.  It is something I could sink my teeth in to...(hey, I can hear you again..working on dieting)....  For me to write, it would have to be the subject matter of this blog.  I believe I can only write honestly, and talk about what I know to be true about myself.

My biggest obstacle is myself.  I am not confident enough in my writing to take it beyond this blog.  On the other hand, if a magazine carried a monthly article written by someone chronically ill, written brutally honest in discussing the lows and how very exciting the highs can feel.....I would immediately subscribe to that magazine.  I can't help but think that there are so many in my position that would feel the same way.  I am obviously not a psychologist or even college educated.  In this case, I don't feel it is a necessity, since I would only be talking about my experiences...how I am affected by the good and bad....and good :)

The other night I was on the phone with my daughter-in-law, Danielle, for a long time. We were discussing this and she was helping in giving me the push and saying how great it would be.  Thanks Dil :)  I told Danielle that I would want to start inquiring at the very top ("O Magazine".."I thought she said she wasn't confident!!!").  Starting at the top, then OBVIOUSLY, working my way down, down, down immediately!! 

Confident or not, I have decided that I do want to pursue taking this to a new level, to reach more and more chronically ill people, along with their families and friends.  Not sure what the first step would be.  Is it the type of thing that I would need an agent for, or would I contact the magazines personally?  Any suggestions??

Honestly, it would be so incredibly rewarding and fulfilling......exactly what I am lacking in my life....I would love to make a difference...

Nothing much happening, but still talking...

Well, I'm still excited that I may have accepted my condition. In reading over my last blog, I hope I didn't sound like I was going overboard with the family/love talk. but they really are the best I know everyone feels the same way about their own families. I guess the best way I can equate my feelings is like when a person loses their sight, then their remaining senses are heightened. That is how I FINALLY felt, after losing the parts of my life that have nothing to do with my family. Even though I was always grateful to have such amazing support, I was too fixated on what I have lost. It feels kinda' good letting that go....actually really good!!!! "Acceptance" was a big deal to check off of my to-do-list.


Now, with that being said (I hate talking like Simon Cowell!), I will no doubt be posting on days when I am extremely disgusted, depressed and just very sick. I can accept my situation, but still hate it. So, I am apologizing in advance for those inevitable posts. Maybe some day, I will learn not to hate it.


When I saw my neurologist the other day, he prescribed medication that he said could possibly enable me to be vertical and upright for longer periods of time. I was shocked that there was such a medication. The following day, I had to go to an eye doctor appointment. I thought that would be a good opportunity to try it out. The doctor's office is only two miles away, so I had high hopes. The new prescription did not work for me. I couldn't believe how sick I got while waiting for the doctor to come in the examination room. It was horrible!! My neurologist told me that it might not work. I'm going to take it again for football Sunday, this weekend. I'm sure it won't help, but it won't hurt to give it one more try. Whether it works or not, it will still be so much fun having everyone here.


There are some times when I am shocked at how good I do. It is rare, but a really nice surprise when it happens. 


Yesterday, I went to pick out new glasses. At this point, I really need to be wearing them all the time. I picked out a pair that I thought I liked, until I saw a beautiful woman on "Harry's Law" last night. I loved her glasses, so naturally, if I got the same ones, I would look just like her...duh! Desperate me, went back to try out new frames again today...you'll never believe it....I tried on glasses like hers and I still looked like me :( I left my original order in tact. I think I need to go to "For Eyes"..they have that commercial where everything looks more beautiful when you put on their glasses....shoulda', woulda', coulda'....I really want to look like that girl!


So, the next thing to check off on my to-do-list is coming up with a new career ~ I know, ha ha ha.....with a slow sarcastic clap :) I REALLY want to come up with some way to make money. I've worked my entire life and it is upsetting that I can no longer contribute. There has to be something I can do...but what???? If anyone has ideas, please let me know. My limitations make it pretty much impossible to do any kind of work. I'm just hoping that there is something perfect for my situation that I haven't thought of yet. Something simple, like a part in a Broadway play...I'm such a dreamer...oh, and I want to decorate the set too...

And All Thaaat Jaaazzzz....

Today, I had a a doctor's appointment in Miami and drove down with the "Chicago" soundtrack on full throttle.  It's funny because I did remarkably well (physically) today, and I swear it was the shot in the arm from my sing along on the turnpike and 95!  Actually, at times, it was more like the soundtrack was singing along with me...fun, fun, fun!! I haven't listened to it in years and I didn't skip a beat, not to be confused with singing on key :)  I know that Erica, Kathy and Ceal are so upset they missed my performance....actually, they have heard enough to last a lifetime.  I can't believe I was so abusive to my friends! While driving, I also had to work in some Fosse upper body dance moves...I was SO good!!!!  I've said it before and it is really true, music is the best medicine...after laughter, of course.

Anyway, I saw my UM neurologist today.  He, like every other doctor, contradicts what the previous doctor had said.  UGH...everything is so complicated.  He seems to think that I am leaking a lot of spinal cord fluid, which would account for only part of my problems.  I have three MRI's coming up. Dr. Adams is hoping to get a better look.  If it is so, I would need to see a neurosurgeon.  Although, he said he is not comfortable with me having any type of surgery with the size of my aneurysm.  So, blah, blah, blah...round and round and more of the same.  

In two weeks, I'll have a CT scan of my aneurysm to see that status.  My neurologist thinks it should be removed now and feels that it is already too large.  My cardiologist is trying to hold off as long as possible, due to the life altering after effects (caused by my neurological and autoimmune issues).  I do what I need to do as far as testing and doctor appointments, regarding the aneurysm issue, but aside from the actual appointments, I bury my head in the sand.  I'm trying to stay upbeat and thinking about that would be too upsetting.  

I never ask for prayers because I feel that there are so many other people and heartbreaking stories out there that are more "prayer worthy".  In this case, I really could use some prayers with the aneurysm.  It is a bad situation and one that I cannot imagine facing.  POOF - it's out of my mind again :)

So, I have to tell you (you, meaning the computer monitor) about our absolutely perfect thirtieth anniversary week, which unfortunately ended last night :(

I spent countless hours, for months and months, trying to come up with the perfect way to celebrate, in a way that I could manage with my health issues.  I am SO happy that we didn't try to go to a resort in the Keys or Naples.  There is NO way that I could have handled it and it would have killed me to spend the money, only to be stuck in bed.  I was tempted to take a "leap of faith" and just go for it, but our staycation was the right choice.  Jimmy took ...oh, excuse me, St./Poor Jimmy took the week off.  We went out to dinner when I felt I could handle it.  On our actual anniversary night, we went to Truluck's.   ANYONE LIVING IN FLORIDA, OR IF YOU VISIT FLORIDA, YOU MUST GO!!!!  It is an amazing restaurant.  They have one in Boca on Mizner, one in Ft. Lauderdale, next to the Blue Martini and one in South Beach.  AMAZING!!!!  They have their own fishing boats that go out and catch king crabs, with legs that are the size of my own!  They also have their own ranches, where they breed their own cattle.  The food and atmosphere were super special and perfect for such a special night.

When we first sat down, they had background music on.  Now I know this is going to sound super cornball....but, they had Kenny Rogers singing "Lady".  When we were first married, that was the only song that Jimmy would always want to slow dance to.  I haven't heard it in at least fifteen years.  Sooooo, I crumbled in to a puddle of tears.  EMBARRASSING!!!!  I was sobbing and couldn't talk.  The waitress aka my nurse for the evening was so sweet and understanding.  Unfortunately, the embarrassment didn't stop there.  After our appetizer (be still my heart, it was so delicious), I started to nosedive.  We were seated in a beautiful, leather, very high backed round booth.  I had two options....leave or lie down.  My biggest fear came true...I guess the restaurant should have been called Trunoluck's.  This is what I was fretting about for months.  I spoke with my waitress/nurse and explained that I had to lie down on the booth.  She couldn't have been sweeter and brought table covers for me to use as a pillow.  I had to have my head down and my feet up.  I stayed in that position until our entrees (be still my heart, it was so delicious) came.  We had to order our deserts to go and I even had to leave before Jimmy got the check.  I needed to be in the car with the seat fully reclined. The restaurant is approximately half an hour from our house....too far for me.  The ride home seemed to take forever.  I had to get in bed immediately.

I guess you could say "lesson learned".  I was hoping my adrenaline would carry me through the dinner, but it was not to be.  Throughout the week, we did go to some local places, where we could "hit it and quit it"!  In fact we went to one of my favorites, Tavolino's, last night.  We got there super early, so we wouldn't have to wait.  I don't think we were in there an hour.  By the time we left, it was almost impossible to put one foot in front of the other.  The good news is that it was only a few miles from our house.

In the end, I would still have to say that we had a beautiful week.  The kids and my parents kicked it off with bringing catered food from Tavolino's last Sunday, for our anniversary and our first football Sunday.  We were so surprised and everything was delicious.

Another exciting "happening" last Sunday, was that Ryan and Liz found out that the offer they made on a beautiful home in Coral Springs was accepted.  We were all so happy that they got the news while we were all together.  Each and every one of us is over the moon happy for them....and the best part is that they have several bedrooms to fill up .... counting the minutes!!!!!!!...but, no pressure :)

Okay, so back to lesson learned.  I think I learned a long overdue lesson last week. I'm hoping it is a permanent revelation...time will tell.  In many of my previous posts, I have mentioned that I do not understand why I cannot accept my health issues.  I mean, we are talking over six years.  As much as I do not want to surrender, I know it would be emotionally very healthy for me to accept the hand I have been dealt.  It would actually be like a huge weight lifted.  I cannot pinpoint what exactly happened, but I felt a peace come over me by the middle of the week.  I actually felt at peace with my situation....could that possibly be so???????  In giving it a lot of thought in trying to make sense of this change of attitude, I came to the conclusion that it has to be due to my family.  I know that everyone loves their family and how important their family is to them.  My family has been unbelievably loving and supportive with all that the last six years has brought.  I never took that for granted, but still horribly longed for the rest of my life that was missing.    

Last week, I felt overwhelmed with love all around me.  Love from my family of gold, both immediate and extended family.  What I was feeling was so intense, that I felt I couldn't possibly ask for more.  Sure, I do miss so much about my old life.  That will always be.  It is now a distant longing.  I feel like I actually turned the corner....is this possible????  I feel so strong in my happiness and satisfaction with my life.  In six years, this feeling has never come over me...not even for a second.  I am so hopeful that my desperate denial is really behind me. I guess, like in "Chicago", my family "razzle ~ dazzled" me.  I wish I could whistle it like "Billy Flynn", but my mother and Diane Chambers are the only two women I know who can whistle like a man!! 

I have to add....why is it that other blogs I have read are only one or two short paragraphs per post?????  Mission Impossible... no can do :0

Another big milestone was hit this week... my parent's 62nd anniversary! Congratulations to the bride and groom !!!


Not to be forgotten, my granddaughter, Gabby, got her ears pierced.  Tiny pink sparkly little earrings.  Although she is only two, I know she felt like she had to wait "forevah"!!!! Such a funny, funny little princess :) Razzle Dazzle 'em, Princess Gabriella!!!

Back in business......

I HATE COMPUTERS!!!!!    UGH....I just wrote half of the post and somehow managed to delete it, while I thought I was just typing!!  

Okay, so where was I.....well, this past week has been rough and "rocky" to say the least.  I had three kidney stone attacks, beginning with a trip to the ER on Monday.  The attacks alone were absolutely horrible, with one lasting most of one day.  Almost as bad as the attacks themselves,  was the after effects they had on my other health issues....not good.  At this point, I am pretty confident that they are now in the "passed".  

We are about to enter into.....our thirtieth anniversary..... week!  I am excited and hoping for an "out of the norm" week.  Jimmy is taking the week off, with the hopes that I will be up to venturing out here and there.  I'm afraid there won't be too much of that going on, but any time we do get out will be great.  Our anniversaries are always really special.  Taking in to consideration that we have been to hell and back the past few years, we need this week to exhale, relax and hopefully get to some great restaurants, as well as a few other things we have in mind......trying to think positive....I think I can...I think I can................

In order to get the perfect card for Jimmy (aka Poor Jimmy, PJ, St. Jimmy, etc.), I knew I had to get myself out of the house today.  Otherwise, he would be home and with me....it wouldn't be the same.  Last year we were in the Hallmark store together and were kidding that we would pick out the perfect cards, show them to each other, then put them back :)

I took my crazy fast power w/c to the mall, bought the "Poor Saint" a gift and card.  Not to say there weren't several casualties along the way...as in a stack of cashmere sweaters that are now on the ground and the countless people that I came SO close to running in to.  I have a habit of keeping the w/c on the highest speed (surprise, surprise!),  which makes it seem like a runaway train.  If I had a nickel for every time I said "Oh, I'm SO SOOOOOORY!!!...well, I'd own Nickelodeon...  I bump in to every single display, then drag it along with me.  When I got to Macy's, a lady was nice enough to hold the door open for me and I still managed to get half way over the threshold and somehow the chair turned ninety degrees sideways, so I was straddling the threshold and kind of stuck...not pretty.  AGAIN...embarrassing!!!  Well, let's just say that none of the displays in Macy's or the Hallmark store are where they were before I came barreling in.  Thank God I don't have a license plate on that thing...everyone would be writing it down.

After that I had to go to Walmart.  Since the battery on my w/c seemed to be dying (I think it was "fake" calling in sick to keep me away), I used Walmart's scooters.  I am here to tell you that they have the best scooters, compared to Publix, Lowes, Home Depot and Target. I might have a vivid imagination (again, surprise, surprise) but, I kind of felt like the front two wheels came off the ground when I hit forward.  Walmart is a crazy place and I was happy I could get in and out fast!

Most of you know that we have had our Steuber Eagle's Sundays for the past seven years.  Everyone comes in their jerseys, including the babydolls.  My mom and I are the only ones wearing civies.  So, you Eagles fans, this Sunday is our first of the season.  I am SO excited, although I will probably be in bed listening to everyone screaming in the other room...I really, really love just hearing them all so excited....then, eventually the kiddies coming in bed with me!  I found an amazing Philly soft pretzel recipe and hoping that Jimmy and I will be able to make them for the big game....speaking of "Philly", we are going to miss Phil and Laura terribly this season :(

The fact that I am able to sit at the computer after my "outing" today, is a really big deal.  I know it is entirely due to my adrenaline pumping because of the possibility of an exciting week ahead....although it is too soon for the adrenaline....but, you all know me.... 

The Morning Newzzzzzz......

The good newzzzzzzzzz is that I got some sleep last night!!!!  SO exciting to not only get sleep...but to get it when it is actually nighttime is amazzzzzzing.  I slept from approximately 1:00 am until 5:00 am ...for me that is huge these dayzzzzzzz!!!! 

It has been exceptionally hard lately....but I say that a lot.  I think I mentioned in a previous post, that this is probably my new low/normal.  I wish I could accurately describe what goes on with my body.  It is even hard for me to comprehend....still!!!  

When I go to doctor's appointments, they give me a written synopsis of my appointment.  I never bother to read them.  The last time I went,  something caught my eye about a Karnofsky score, but didn't know what it was.  I expected to google it when I got home, but never got around to it.    This morning, I finally looked it up.  It really isn't a big deal, but still a kick in the stomach kind of feeling.  Basically, the Karnofsky score is what they use to determine if a terminally ill patient qualifies for hospice...or in my case, level of debilitation.   Normal is 100 and at 70, you qualify for hospice.  I was shocked to see that my score ranges between 30 and 40 - considered between disabled and hospitalized/severely disabled.  The only reason I am writing about this, is to try to convey how difficult my days really are.  I guess that I want you to know that I am not exaggerating my condition...especially for those that I rarely see or those that didn't know me before I got sick.  It's funny, Ryan and Phil's wives didn't meet me until I was sick.  I have told them ...over and over and over..."hey....I used to be fun..I swear (as I am swearing) !!"   Oh well...I kind of feel like they will never really know who I am, because this isn't me.

My friend Vicki, from Seattle is very sick as well.  In fact, we met on the MS message boards years ago.  Unfortunately she is going through a rough spell right now.  Vicki recently texted me the following message "Do you ever feel angry about being sick and about all the things we've lost or miss out on?  I'm so angry inside today...just steaming inside.  I hate to even admit that, but thought you might understand.  Thanks for letting me vent.".  YES, YES, YES!!!  I do understand and I do feel angry...furious...wanting-to-punch-a-hole-in-the-wall-mad, at what I've lost and continue to miss out on.  Hey, I missed Ryan and Liz's wedding....that's about as bad as it can get.  (I will never, ever get over that).  I completely see myself in Vicki's text.  Especially where she said that she "hates to admit it".  Honestly, Vicki shouldn't hate to admit it at all.  We are not super human.  So often, I have intense feelings of guilt for being incredibly sad about my life.  The last thing Vicki and I need is to beat ourselves up for feeling sad.  It's happens....to be expected....we would not be human if we had a perpetual smile on our faces while dealing with being so sick, with no chance of cure or improvement....  BUT, I do still feel guilty when the intense sadness comes over me.  I have to learn to allow myself that "luxury".  Obviously, if it was chronic, never ending sadness, it would be time to see my psychologist to help me over the hump...been there/done that, and probably will again the next time I completely crumble.  Anyway, I guess that Vicki and I have to learn to cross guilt off of our list of issues!!!  Hear me sister????

"Anywaaays"....I've been singing along with my playlist again while writing.  I sang along with Neil Young and I swear I sounded just like him...not that it is anything to brag about!...I was belting out "Lost" with Coldplay..my dog was even howling..that's a good thing...right???  Best of all, was the Beach Boys (and I) singing "God Only Knows....what I'd be without you"..I couldn't have said it better myself....XO

As usual....one more thing...HAPPY, HAPPY BIRTHDAY TO MY BEAUTIFUL, AMAZING GIRLFRIEND,ERICA... you are most definitely high up on my list of who I think of when I hear "God Only Knows"...I can't believe it....it just started playing again...not a coincidence :)