Double Whammy Week...

Such an exciting week!  Lisa, John and Dan (my brother, sister-in-law and nephew) are down from PA. Like my sister Nancy, they are staying at my parents. They came on Saturday.  So far, I have seen Lisa three times, which is really great.  Unfortunately, they leave on Friday....I hate to see them go :( ....don't go....

I decided to have an impromptu post-wedding shower for my newest beautiful daughter-in-law, Laura.  SO MUCH FUN!!!!   The adrenaline rushes between John, Lisa and Dan being here, then  planning the shower has kept me afloat.  The shower was last night and it was such a special night.  Everyone was so sweet and happy to be there for Laura.  You could feel the happiness in the air - magical! I wish we could go back and do it all over again!  It's been a long time since I laughed so much = best medicine..I think I overdosed :)

Lisa was a HUGE help in getting balloons, favors and ton 'o gifts! Not to mention, Lisa is the best photographer.  I am looking forward to seeing the pictures.  My mother said they turned out great. It was so sweet seeing Laura's face when she realized what she walked in to.  We are all so happy for Laura and Phil.  Liz (another wonderful daughter-in-law...I have the best DIL's - so grateful) brought the cake with the best wording...."The Best Is Yet To Come".  I thought that was perfect, since Phil and Laura have a beautiful new life ahead of them and so much to look forward to.

I took my power/reclining w/c in the restaurant for the party.  Thank God I have that monster.  If I didn't have it, I would have had to leave before dinner was served.  It enabled me to completely recline for a large part of the party.  Also, we were fortunate enough to have a private room, considering it was last minute....as in 24 hours notice!!  I wouldn't have been as comfortable being fully reclined in the main part of the restaurant, for obvious reasons.   Everything worked out perfect.  It always seems that the impromptu plans are the most successful and fun.

Today, everything came crashing down, physically.  I knew to expect it. The price I pay for exceptional, special times is so hard, but so worth it.  When I am over the top pumped, psyched, crazy excited about something, it triggers my adrenaline to go through the roof and that is what carries me through these exciting times.  It isn't always a "given", but when it happens, I have to go for it.  As for this week, I am on borrowed time at this point.  I just need one more day!!!

Hoping I come out of it enough to see John, Lisa and Dan again tomorrow. Tomorrow HAS to be better than today....got it???

I have to admit, that I was glued to the TV for Oprah's last three shows....and, I have to admit there were several moments that brought me to tears....super sap!  Today was her final show and it was just Oprah talking to the audience.  She said so many inspirational things.  I was trying to remember, so I could pass them on to anyone that missed the show.  The show was recorded, so I will watch again and post some of her tremendous quotes.  She really is something!

Again, I went a week between posts.  It is too hard to write when I am not up to it. I just couldn't let another day pass without talking about Laura's shower and the excitement with Lisa, John and Dan.  I have to hold on for one more day....I think I can..I think I can..I think I can..

Escape From Alcatraz....

...I need to see that movie again, and take some notes.  If they can do it, so can I.  I can't escape that I need to escape.  Looks like I need to get back to the drawing board.  There has to be a way that I can pick up and ...as I said too many times, not look back.  I was hoping the dinner in Deerfield Beach last Thursday would suffice, but the emotional relief (as amazing... awesomest... as it was) was short lived.  I doubt we'll do it, but if the conditions are perfect, maybe we will go back to the beach lounge chairs again tonight or tommorow.  The need to run away is overwhelming.. ...I know it is for many these days, ...I'm not alone.

The real truth is that I have to face facts and get over myself.  Just like Prissy, the maid, in "Gone With The Wind" ~   "I don't know nothin' 'bout birthin' no baby"...SMACK! I need to smacked in to reality..in fact "beat the hell out of" in to reality. I'm sure if Christoper Reeve were still alive, he would have a more positive blog than mine has been lately...so what's the deal with me???? ...another reason to feel guilty.

My head is spinning regarding my many doctor appointments.  For the past few years, I wondered what would happen when I got too sick to make it to them.  It is becoming obvious to me that I am inching closer and closer to that day.  In the meantime, I can still go, but it is not easy.  Over the past several months, I have had countless canceled doctor appointments.  As the day approaches, I begin to weigh and measure the pro's and con's.  In most cases, I opt to cancel, with the intention to reschedule.  I can see a pattern forming.  To be honest, I'm not sure if the appointments cause me to physically suffer more these days, or if I just know what to expect and decide that I've had enough.  The fact that my doctors often contradict each other makes the decision a little easier.

At this point, I have canceled my May appointments.  I have a few in June and July that I can't, or at least shouldn't, cancel.  It is time for me to really pull myself together to make as many as possible.  I have to take it an appointment at a time...but I always have.

In my last post, I mentioned that I was going to call my cardiologist - didn't do it.  I will get to it soon.  As stupid and ridiculous as this sounds, I am waiting for one more episode before calling...anything to prolong the inevitable visit,  testing and follow-up visit.  I'm too tired to deal with it.

I've noticed that my blog entries have been taking a different tone lately.  It isn't my intention to be so heavy and clinical in what I write.  Believe me, it is so much more fun to write about nonsense.  In these boring posts, I really do feel like I am writing to myself, in a journal and wasting the time of everyone reading.  Unfortunately, I can't write what I don't feel, and only write what I do.

Something crazy is going to happen and I'll be back on, sitting on the edge of my seat, telling you all..."wait 'till you hear this...."  I look forward to coming back with a better balance of fun/reality.

I have an "awesomest" moment for today....I want to wish a big, beautiful Happy Birthday to my sweet niece, Dr. Keli Steuber...Woo Hoo!  Happy Birthday 30th Kel...I hope all of your birthday wishes come true...XOXO

It Is What It Is...

I'm back again, still trying to sort out my medical mess.  Today, I spoke with a woman from the immunologist's support group.  She was so sweet to take the time to talk to this imperfect stranger.  I learned some new information, that was much needed.  After our talk, I might be changing doctors, which would be great.  

There is SO much I could tell you all.  As anyone that knows me will agree, my life is an open book - BIG TIME! It's not that I am holding back the nitty gritty details because they are too personal...no such thing!  It is more that I usually don't feel like talking about it.  There is so much going on that it makes it almost impossible to explain in a coherent manner.  As things unfold, I'll definitely be posting about them.  Other than that, I might isolate one issue at a time, and talk about just that.

In my last post, I mentioned that I deleted the previous post.  I was concerned that I opened up too much to so many.  There are some who are reading out of curiosity, others because they do want to know how things are going and lastly, those that are very sick.  When I began this blog, its sole purpose was to keep my family and closest friends updated, since I am rarely on the phone.  I know I mentioned before that the blog has taken on a life, and new direction, of its own.  The feedback that I have received from others very sick has really touched me.  Because of this, I started the second blog, where I open up a bit more.  It has been great having a place to run.

Some of the letters I received made me wonder if I did the correct thing in deleting the post the other day.  I am not going to re-post it, but next time I am in that space, I will probably let it be.  It is those posts that reach out and touch the very ill readers.  Their full page responses fuel me to continue with this blog.  If it weren't for their feedback,  encouragement and gratitude for my honesty/openness, I would have stopped blogging by now.  I absolutely love that connection.  It is like I am throwing them a rope and they are throwing me one in return.  It works both ways.  Anyone that is sick or going through a particularly rough time is welcome to view my other blog.  Please e-mail me for information if you are interested.

Most in my position do not know anyone dealing with such heavy issues.  Issues that you have to be facing yourself to truly understand.  In most cases, there isn't a soul you can talk to that will understand - completely.  Because of that, we tend to keep too much bottled up.

Some of my readers probably don't understand what I am trying to accomplish, and that is okay.  In fact, they are lucky not to understand.  What is important to me, is that the ones that need it understand and find relief to know that I am dealing with the same emotional/physical struggles. We speak the same language. I know how validating it is to hear someone else verbalize what I am thinking to myself.  It is a club none of us want to be part of, but a club nonetheless...

Above, I mentioned talking about one issue at a time.  Here's one for ya'...I will explain a little about my aortic valve/aortic aneurysm issue.  This is the most life threatening, scary issue I am facing.  I am on the cusp of being "ripe" for surgery and that horrifies me.  In the past, I have had five surgeries ~ unfortunately none of them plastic ~ and never been afraid.  The surgery to resection the aortic aneurysm is very intense, for the average person.  In my case, it is much more complicated with my autonomic and multiple autoimmune issues.  My daughter-in-law, Liz, is an ICU nurse manager.  Liz has friends that have worked with the best cardiologists in S. Florida.  Liz questioned if the surgeon would even agree to do the surgery, due to my complications...NOT AN OPTION!!!  I'll do the surgery myself, if I have to.  Three doctors have told me that once I have this surgery, I will never recover and be at a permanent point of no return. This appears to be a fact. The thought of being worse than I am brings me to tears. I can't imagine having less of a life than I do now, because I don't have one.  Like I said in my deleted post - I want to run and not look back.

For the past year or two, I have had a lot of chest pain and pressure.  I knew and recognized that it was not cardiac in nature, but rather due to my other issues.  Lately, it is presenting in a different way, and that worries me.  Again, in my deleted post, I mentioned that I had a chest crushing feeling from a very short walk on the beach.  This feels different and I suspect it is cardiac.  I hope I'm wrong.  The other chest pressure that I had experienced was random.  This new and different pressure seems to correlate with exerting energy, which I suspect is a red flag. I could be wrong.....the good news is that when I think of all the times I've been wrong, it puts the odds in my favor :) 

At this point, I am not due to see my cardiologist until the fall.  I had appointments scheduled with two of the best in Miami, to get second/third opinions, but canceled them.  The doctor appt's are hard on me physically....I know, not a good excuse.  Tomorrow (actually today, since it is after midnight) I plan on calling my cardiologist and I'm sure they'll get me in soon.  Knowing him, he'll order an echo and stress test.  At least, he is more local and not as far as Miami.  

I received a great letter from an old friend from Kimberton, Bonnie.  She and I are in the exact same position with the aneurysm situation.  Bonnie told me that it is a connective tissue disorder, which is also autoimmune.  I had no idea and was really surprised when I read her letter.  Bonnie is going to the  University of Pennsylvania (home of all my old doctors) - lucky duck!!!!!!!! 

The connective tissue connection is a fact that is the stance of the Cleveland Clinic, and my cardiologist is with the Cleveland Clinic in FL.  I assume he knows this...I'm anxious to see him.

In the deleted post, I mentioned the new book, titled something like "100 Most Awesomest Things".  In it, the author tries to point out the littlest things that can happen in a day that can be called "awesome".  One of his examples was going to the store to pick something up and finding it is on sale - "Woo Hoo..Awesome!"  So, I'm trying to think of an "awesomest" moment from today...hhhmmmm...hearing from that sweet woman from the support group - Awesome!  Jimmy went food shopping and continues to be a great enabler - Awesome!  Reading beautiful letters from Lisa and Nancy - Awesomest!!!

Anyway, I wanted to come on and explain why the deleted post was so raw, for those that read it before I deleted it.   So, I take back what I wrote, as far as keeping the posts limited to the more upbeat subjects.  Erica and I (wish she was here with me) say ~ IT IS WHAT IT IS....and as my brother & Gary King said almost fifty years ago, and might still be sayin'....LIKE IT OR LUMP IT :)

Blog Speed Bump..

Earlier this morning, I posted an entry on this blog.  Ever since I hit "publish post", it didn't feel right.  I felt  like I was sharing too much.  I had to come back and delete the post.  It is so hard to know how much to share and what is appropriate. I must have read and re-read the post twenty times, each time asking myself if it was too much of a pity party, or if it could be helpful to others that are very sick.  I just didn't know.

Writing the blog can be many things from fun updates, to a place to unload, etc.  It is hard to find the perfect balance of how much to share.  When things are difficult, it is hard to come on and write.  After several days, I begin to feel obligated to check in.  I think I'll forgo the heavy posts and let the days pass until I am in a better state of mind....you're welcome :)

These days, my sleep schedule is crazy.  Most days, I get to sleep between 10:00 am and noon, then wake up around 3:00 or 4:00 pm.  At this point, it is a little after 11:00  am and I haven't slept since yesterday afternoon, which was just for a few hours.  I'm bleary eyed and going to bed.

Sorry about the speed bump...

Like sand through the hourglass, so are the days...AND NIGHTS...of my life..

I am surprised to be writing at almost 4:00 am tonight, since I am so exhausted.  I have three different sleep disorders, due to my autonomic nervous system issues, but it is so frustrating to be awake and tired at the same time.  I've mentioned this before, but I hate being sentenced to night after night in this black and silent house.  It is too heavy....ENOUGH!

Anyway, I was watching "Brothers & Sisters" tonight.  I don't know if any of you watch it.  For those who don't, it is a prime time soap opera.  The same soap "operish"  type dilemmas, that you would find in any corny daytime soap.  The silliest thing triggered emotional feelings in me tonight.  It doesn't take much to trigger this emotional, anxious nut.  Being emotional and anxious go hand in hand with neurological problems...just what I need.

At the end of the episode, Sally Field was making a change in her life.  Again, no big deal, she had been widowed for years and decided to fall in love.  SO WHAT??...to normal people.  

For me, I saw that she took the option to make a major change in her life, and go off the tracks in a new direction. I know this sounds like such a crazy twist , but I thought about being in the position I am in, and not having the option to change my life.  I would love to be Sally Field and make a conscious decision to take another path.  Why would I take this simple show and translate it to my problems????...such a wild imagination and insane stretch.  

I want this to be over, dust myself off and get the show on the road...as if I have the option.  I want control of what is happening to me, plain and simple.  Obviously, I am still light years away from acceptance.  To be honest, I am scared of acceptance.  Would it be harder or easier than keeping my head in the sand???????  I'm afraid to take that leap, if I even could.

I have talked about my pending doctors appointments, especially those concerning my cardiac issue.  As of now, I am canceling all of my appointments.   With each doctor contradicting the one before, I am losing trust and confidence with all my doctors.  Going to so many appointments in Miami is physically exhausting, which ultimately wears me down emotionally.   I am putting everything on hold indefinitely.  No doctors...period. Well I guess I can say that I took control of something ... big deal.

I need Mr. Sandman to "Send Me a Dream, Anderson Cooper"  and while he is at it, he can bring me a bucket of sand to put my head in to (preferably Naples, FL sand ~ it's like baby powder)....I think that would just about do it for now.

Sorry that I'm not exactly making sand angels in the sand today, but I am ready for this to be over.  I want my life back....all of it.

Ooooh what a whiner ~ especially with so many out there in much worse shape than me.....I apologize for being such a "beach". I wish I could be "bigger" than how I am portraying myself in this post, but it is important to me that I am always honest.  With luck, this spell will pass. I understand the phase I am in now is unreasonable....but, it is no less real.

It is about time to take control again and call 411 for Mr. Sandman's number.  Since he has been around for years, I assume he is pretty good. Ring..Ring..."Mister Saaandmaaan????....YYYEEEEESSSS"  (again for the seniors)

On the upside, I am hoping my mother had a Happy Mother's Day yesterday.  Mom, you're the best mom, gram & Gigi out there!  I'm happy I was able to get over to see you!!  In your case, every day should be Mother's Day! XO

Hola Amigos....

...I made it over to see the kids yesterday while my mother and "Pippa" were babysitting.  Ryan also stopped over.  It was so nice to see Danielle when she got home too.  It was funny because we all started several cris-cross conversations and I don't think a single one was completed. I was hesitant to go, not wanting to eventually pay for it.  Luckily, I didn't have any more problems than normal.  



Brayden greeted me at the door, SO adorable and sweet.  He said "MIMI", then stretched out his arms to hug me.  I thought I was going to completely melt right there on the spot.  Immediately, I knew that even if I did get very sick, it would be worth it.   

I felt like I committed a crime and got away with it...I'm a rebel :)  I've said before that I would like to go out and come home before my body knows I left...I pulled it off...kind of like that Irish blessing, "May you be in Heaven a full half hour before the Devil knows you're dead".  I hope I can pull that one off too!!


This has been such a crazy week with the Bin Laden news.  WOW, like the rest of the country, the horror of 9/11 started flooding back to me.  So intense!  Not to mention those Nave SEALS are like animals - they are real life super heroes!!  Their bravery is beyond anything I could imagine.

Now for the pleasant part of the endless news coverage from this past week....I'm feeling closer and closer to Anderson Cooper! Yeah... I am, there I said it. If my marriage doesn't work out...(I know it will soon be thirty years, but you never know...), then Anderson (Andy Candy) is the guy for me!!  HE...IS...SO...ADORABLE!!!!  I would like to thank the SEALS for bringing us closer... XO

I have been having a horrible time getting sleep...aaaand, the more time I am awake, the more frequent are the trips to la cocina (cinco de mayo nod)   If only I could live on agua....okay, that's the extent of my Spanish!  Oh, oh, I forgot, "Livin' La Vida Loca" Erica....that's what I would like to be doing!


So, I am sitting here at the computer TRYING to stay out of la cocina.  I have been successful for the past two nights.  Even though I have been up all night for the most part (last night until 11:00 am), I am not eating my way /weigh through it.  In addition to avoiding la cocina, I am also avoiding the scale..of course that is the easy part...that and the mirrors.

ADD Alert....I AM DYING FOR A PEANUT BUTTER AND JELLY SANDWICH...So, anyway, Phil is going to be stationed at Charleston, SC.  I am so happy that Phil and Laura are going to such a beautiful place.  They are both really excited and will be moving in approximately one month.  No doubt, they will be having tons of company....especially me and Andy..I mean Jimmy.  

I have never been to Charleston, but have always wanted to go.  Once I go, I know I am not going to want to leave.  Of course, once again, I talk a good game.  It would be a really rough nine hour ride, then I would most probably end up horizontal until we leave.  I would expect to "see" Charleston on our way in and on our way out.  I would love to go around the holidays.  It must be absolutely beautiful at Christmas time.


It is around 1:30 am and I would LOVE to go to bed and actually sleep.  Just hoping I don't stop by la cocina on the way back to la bedroom...can she do it??? 

Buenos Noches Andy...and Amigos

Pippa is here!

It is hard to believe that I haven't written in six days.  Could it be that I haven't had anything to say???  Well, that can't be...

I'm excited that my sister Nancy is visiting for ten days from NJ...and for my Burlington County/Triboro area friends...she brought a fresh box of cream donuts from L & M - WOOOOO HOOOOO :D...I thought I was going to faint when she told me what was in "the box" - YUM!!! You would have thought she told me there was a million dollars in there for me!  L & M can NEVER EVER close!!!  They just don't have bakeries like that anymore.  

Nancy flew in on Saturday and is staying at my parents, on the beach.  Jimmy and I went over for dinner & dessert, well, actually dessert, dinner, dessert, dessert...those delicious cream donuts! It was so great to go and sit outside looking at the beautiful ocean and palm trees, while we were...well, while I was talking.  I lasted much longer than expected, so that was great.  On the other hand, the reason we went is that I knew my adrenaline would be pumping, with it being Nancy's first day here.  It was great to take advantage of that extra push and get over to visit...anyplace but in my house!!!!!  Nancy looks beautiful as ever...I think I'll call her "Pippa" :)

I had to reschedule my blood work, relating to my diabetes because of Easter, and now that Nancy showed up with edible heaven, I had to reschedule it again!  I am hopeless!!!  Where can I get a taste budectomy????   No, really, where????

At this point, it is after 8:00 am and I still haven't slept.  I'm going to call Nancy to come over when I do sleep and get up.  Hopefully, it won't be too late.

I have to admit that I did watch "the wedding".  It really was beautiful... except for all of those crazy hats!  I was expecting Steve Martin to walk in with the arrow going through his head thing that he always had on (I know, seniors only would know this).  I'm happy that I didn't just take a "sip of tea" when I saw Beatrice get out of the car - yowza!  

As much as I hated the month long hype, I did love watching the day unfold... how could I not??

I decided that it is never too late to make changes... I am going to start walking around the house with a book on my head..."Princess for Dummies".

Tomorrow, my mother and Nancy are going to babysit for the kids in the afternoon.  I am hoping that I can go too....fingers crossed XXXX.

I never did have the appointment with that doctor I spoke about in the last post.  I am going to see another cardiologist in the meantime, then decide if I still need to see him, for his additional areas of interest.

At this point, I am so tired that I am seeing double....I wish the cream donuts were here now!  I'm going to try to sleep, once again.  

As you can imagine, I do have more to talk about, just too tired to remember.  I hope to write more in the next day or two.  

I have to get some sleep in so I can see Pippa this afternoon!