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!

Oy Vey with the Royal Wedding...

....I feel like we are all held hostage by this Royal insanity!!  Of course, I am stuck in front of the TV more than most, but why, why, why didn't they just go to Vegas???   At this point, I am completely educated on their royal etiquette and ready for tea with the Queen ~  a Long Island Iced Tea, that is.  Anyway, it looks like I'll be under suicide watch until Saturday - Royal torture!  Where's the Calgon when I need it??????

It has been a rocky road lately.  I'm trying to take a lot of what is going on in stride, and that is a job in itself.  Over the next few months, I have several doctor appointments scheduled, in the hopes of clarifying my changing symptoms.  Is it still called deja vu, when it is the zillionth time???

Tomorrow, I am possibly going to see a new doctor that I hear has NO bedside manner -  If I go, I'll have my "dukes" (not daisy) up and ready for him. He is supposedly a genius..so much so, he doesn't accept any insurance  - how nice.

This doctor is an electrophysiologist (cardiology speciality).  Apparently, he can help with my autonomic/cardiac issues and how they complicate my aneurysm issue. This is information that I need to know now.  If I actually go tomorrow, I will post and let you know...or I might be on the evening news with handcuffs if he is as harsh as I have heard.  Put 'em up...put 'em up....

Easter was so nice - it was wonderful seeing my family.  As I have said, a million times before, I hate that I can't get down and play on the floor with Brayden, Gabby and Maks.  However, I DID hold Maks for the first time in months and months...and he is only nine months old.  It felt so good to feel his velvety skin, smell his beautiful head and squeeze him, with my eyes closed...aaaahhhhh.  The kids are so adorable and they were eating candy like the ravenous "Golden Corral" gang.  They were "like kids in a candy shop"!  Their faces were a riot, because they looked so content, not a thing on their minds, as they were eating and eating.  LOVE THOSE FACES :)  Gee, I've always wanted to eat them up...I can't believe I missed the opportunity to eat them up when they were stuffed with chocolate ~ shoulda', woulda', coulda'!

I gave the kids candy, along with a lot of junk that came in their baskets.  One of the things was a CHEAP long blond wig (using that term loosely).   At one point, Brayden put it on along with a hat.  Everyone said that he looked like Bret Michaels - I wish I had a picture.   When we were almost to their house, I realized I forgot my camera ~ so mad at myself!!

There seems to be more and more going on with me physically.  I'm not going to get in to it, since it is ridiculously complicated and would take forever for me to explain the ins and outs, and how things that were separate issues are now affecting each other.  It is mind boggling and I still don't feel that I have a great grasp on all the explanations myself.  Hopefully, in the next few months, I will have some more issues weeded out, then treated.  (that's my (royal tea) cup half full talking).

I'll be back on tomorrow, if I see Dr. Fraaaahhhnnkkkensschteeeen.

You can't see me, but I am respectfully curtsying as I back out of the room!!   I hate knowing information that I don't want to know :)

I'm up and running...again...

I have been mentioning on and off that I planned on setting up a second blog.  My new blog is a little more detailed and has more information than most would want/need to know. I am writing about things that only someone in my position, or who was at some point, would be able to fully understand.

I sent an e-mail to a few, whose addresses I have, with the site information. I know there are many readers that I haven't met and want to make this available to them too.  I am keeping this from my family, because I feel like it could be unnecessarily upsetting at times.  HOWEVER, there is one family member that is going to try to "crack the code" and we all know who that is :)  My wish is that the "code" isn't cracked, since it would defeat the purpose of giving me a place to rant and rave.

I just finished writing the first post and I have to say, it felt really, really good!   Anyone dealing with especially hard issues are welcome to view the new blog.  Please e-mail me at csteuber@aol.com if you would like the site address.  I blew through the first post so fast, I don't even know if it makes sense.  I'm just happy the site is set up.

Wishing everyone a beautiful Easter!
XOXO
Cathy

It's been rough....

I am paying the inevitable price that I knew would be coming my way.  Such a horrible day, filled with muscle, bone and nerve pain, ungodly fatigue and a brain that is too weak to function. Walking like I am drunk, is annoying.

The weakness is so intense, that I can feel the energy it takes for the breaths to come up from my lungs to speak.  It can take an enormous amount of energy to speak, not to mention the brain has to function to some extent, to tell my mouth what to say...so much work.  Something, you would have to experience to fully understand.   

Today was a typical "do not answer the phone" day. I wouldn't have answered the phone for anyone, but of course Bruce Springsteen didn't call, so I guess we'll never know how much I meant that statement.  


In many previous posts, I mentioned that I do not want to sing the blues consistent with the frequency of my issues.  There comes a time, when you all obviously "get the picture"....time to move on.  I try to be very sensitive to that issue.


However, from time to time, I am going to talk about what I go through physically.  The only reason for this, is to directly connect with the very ill that are reading my blog.  I would never want someone going through the same extent of my issues, to read my blog and disregard it, thinking ...sh.....ugar, she's not one of us.  I know I joke around when I feel emotionally "up". That is the easiest time for me to post.  Also, I know there have been posts, that kind of give a false/negative of my limitations.  Always trying to straddle the line....


In a recent blog, I mentioned that I plan on starting a new one, specifically for the very ill, or anyone dealing with something that seems insurmountable in their lives.  In this new blog, I will be extremely honest and delve more in to my physical issues, symptoms and disabilities.  Again, not to complain, but to be honest and trust worthy....someone they can relate to.  In fact, I expect it to be almost exactly like this one, just more talk and details about the darker side.  At the same time, I will get on a soapbox, when there is something simple that we all can celebrate, as we find it in ourselves.


Anyway, I'm feeling horrible.  I recently took some pain medication that may or may not help.  I am so beat up, that I actually believe I will go to sleep tonight.

Sorry to be a downer, but want to be real for those that need it.  I don't plan on making a habit of it...I promise!


Beautiful Passover and Easter to all my special friends and family....Shimmer Danielle, Shimmer~Quack, Quack ........Dina~Poo, Poo, Poo ...(poo, poo, poo would mean something different to Danielle!!) no evil eye on my Zieglers! ...Erica, wear your Italian horn....to EA :)  XOXO

Brain not working....boooooring post...sorry!

I have to begin with a disclaimer that my brain isn't fully functioning, so I don't know the direction this entry will take..I'm thinking the sewer with Norton...

I have a few things I would like to cover in this blog...and, thrilled that I have had some "happenings" in my life :)

The surprising news is that I did make it down to the support group at UM yesterday (Wednesday).  I was very nervous because I have a definite time limit on my vertical (sitting/standing) body.  It cannot be put to the test.

On the way, I stopped by a drive-thru and picked up a large unsweetened ice tea.  The caffeine gives me a major boost.  My doctors recommend that I not do this, since it gives me a false sense of mobility and security and adversely affects my autonomic issue. For the immediate future, I saw a possible lift in stamina.  It ultimately will catch up with me and, yes, I will pay.  Not to mention, it will speed up my bp, which aggravates the aneurysm situation.  The million dollar question was "how much mileage could I get out of the caffeine?".  I needed approximately four hours for this ordeal, and the best I have ever managed has been two. If I could pull this off, it would be a miracle   Going out of the gate, I knew I was asking for it.  I have always flown by the seat of my pants!


I've mentioned the adrenaline factor before.  This push can buy me extra time.  However I have to be considerably psyched about something for it to kick in.  It isn't the type of thing that I can control to "kick" in, as needed.  

I was very excited to meet others in my condition.  Also, Dr. Nancy Klimas, research doctor extraordinaire,  was going to be there.  I have never met Dr. Klimas, but have enormous respect for her.

I had the van with my power/reclining w/c in the car with me. 
In the end, I knew that I should have brought my massive power, reclining w/c - the FOUR WHEELER, with me.  I knew it, had it with me in the van, but was hoping the adrenaline and ice tea would do the trick.  Unfortunately, neither of those things help with the autonomic dysfunction.  I know better - no excuses!

I was hoping against hope that I wouldn't need it, so I went in like a "normal person"...I think the others at the table wore T-shirts that said "I'm with stupid', - with arrows pointing toward me! You will see why in a minute. 

Before the doctor walked in the room, I saw her speaking with someone at the doorway.  My heart was racing!  I recognized her from the countless videos I had seen of her, most recently on Katie Couric's Evening News.  When she introduced herself to me, I told her that I felt like I was meeting Bruce Springsteen....she laughed and told me that I would be sorely disappointed - which I definitely was NOT! I have to admit, if the "boss" was really there, I probably would have said "Dr. Nancy Who"???... there goes my ADD again - sorry...

The meeting is just barely what I would consider a support group.  The group does have time to talk half an hour prior to Dr. Springsteen's arrival and half an hour after.  By the time Dr. Klimas left, unfortunately, I HAD to get out of there.  The main agenda of the meeting is to discuss the latest research, different conferences that Dr. Klimas has been to (and they are never ending), advocacy groups, etc.  She/they were talking way over my brain cell deprived head.

I met a very sweet woman, Susanah, sitting next to me.  She was a doll and tried to help keep me up to speed.  From time to time, Dr Klimas would engage in a conversation with someone in her immediate area (opposite side of the conference table). So, ME BEING ME, I took this as my cue to turn to poor Susanah to continue wherever I last left off.  Suddenly, I could sense the silence in the room....OOPS - sorry....that is until the next time or two!  Reminded me so much of first (and every) grade at Sacred Heart - at least Dr. Klimas didn't hold scissors at my mouth to cut my tongue out!!!!   What is that Peter Pan song...? "I will never grow up....."  At 54, I guess I never will!



Horribly, mid way though the meeting my worse fear came true.  I took a major nosedive.  It was terrible.  I was eyeballing the room to see if there were any sofas.  None to be found, only conference chairs.  I got to the point where I HAD to be horizontal.  

Amazingly, at the moment I was going through this, Dr. Klimas was speaking about this very issue.  I interrupted and said that I was going through it as she spoke.  Luckily, the conference chairs reclined completely flat and the sweet woman next to me, pulled up a chair for my legs.  I had to lie like that with my eyes shut. My vocal cords were going along with all that is involved with my blood pooling in my legs and away from my brain and upper body.  Luckily, I was at one end of this very large conference table and Dr. Klimas was at the opposite.  Because of this, all eyes were on her - thank God!

Dr. Klimas will be at the May meeting, which is great since I am still starstruck...she is an angel!  Dr's Klimas and Rey cannot make every meeting, so sometimes it is left up to the group.  As far as May's meeting, I would love to go.  Now that I went to my first one, I am not going to have the adrenaline rush..what was unknown, is now known.  I'll have to see what is happening with me when the time comes. 

My doctor, Dr. Klimas' associate, Dr. Rey, told me that some are not well enough to attend.  I feel that I am on the borderline...(ugh, now I cannot get Madonna's "Borderline" out of my empty head!!...ADD hiccup again)  I really do not want to be one that is left to read newsletters.  I desperately need to speak to others that are going through exactly what I am, face to face. Time will tell.


I have to say that today was a very special, special day!!!  Of all the weeks I have posted that I am going to try and get over to see my grandchildren , an event that never seems to materialize, today I did it!!!!!  It was like another one of those Rocky moments at the top of the Art Museum steps - YAY! ...yeah, I've got the power!!

Brayden, Gabriella and Maks "Doober" are the sweetest, happiest babies and almost a big four year old, I have ever seen.  There are no words!!  So many super tight, easy- squeezy hugs and kisses!  I love, love, love it when they jump on the chair, snuggle and hang all over me!  What is going to happen when they are old enough to ask "Mimi" for expensive things?  I think this brings us back to the post where I mentioned having my jaw wired shut...or at least Jimmy having it shut for me. Geez I guess I'll also need a neck brace so I will not be able to nod my head YES, YES, YES!! I can't imagine ever saying no to them.  KISS... THOSE .... CHUBBY.... ...CHEEKS!!!!!!  This is SO cornball and major cheeeeeese, but they are the "Wind Beneath My Wings"....and they "Raise Me Up"...I know...hard to read :)  See, I told you my brain isn't working tonight, I know there are better songs than those!  In my defense, grandchildren make you cheesy...Chucky Cheesy!


I want to mention two very talented friends of mine.  

First, is Ron Meliment, from Cinnaminson. Ron's name on his new novel is R. Lee Salkind-Meliment.   He has written a beautiful book about the life of Pearl S. Buck, from the time she was a child through the end of her amazing life.  Ron asked me to read it a year or two ago. As most of you know I have ADD.  I love to read, but it HAS to be a page turner, and that it is.  It was one of those books that you sloooow down toward the end of the book, so it lasts longer.  I hope you take the time to check it out.  It is available on Kindle and I am hoping, eventually in hard copy.  You can download Kindle to your PC at no charge, and you can preview the first few chapters.  For those that know me well, you know that I would not post about "Pearl" unless I truly believe in it.  I honestly loved reading "Pearl" and hope you do to ~ not to mention it would be a great book for the beach this summer!  Below is the link.

http://www.pearlthenovel.com/
  

My next very special Seattle friend is Vicki.   She is incredibly talented and creative.  Vicki has a blog - "Simple Hue".  She focuses (no pun intended) on her amazing photography,  highlighting others photographs and all things creative including interior design.   Vickie's blog is beautiful and you could spend a long time exploring all it has to offer.   In the next two or three weeks, she will begin her very first four week e-course.  Vicki will offer three classes per week, with homework.  It caters to your particular interests and talents,  whether you paint, sketch, photograph, or whatever your creative outlet might be. If you think you have none, you might be surprised what you discover about yourself through the course..  To learn more about Vicki's course, google "Simply Hue", it should be the first option to click on.  Once on Vicki's blog, the course is called "Raining Umbrellas"  Hoping the link below will work, but not sure.  Also, you can always contact me for more information.
my new creativity e-course  

I want to add that this course will be so much fun for everyone and anyone.  I am especially sensitive to those that are very ill, and housebound.  This course would be something so much fun and distracting from the normal humdrum. Not to mention, you go at your own pace...a plus for busy moms and those that are ill. I will be taking part in the course and look forward not only to the fun, but every minute of time that I will not be fixated on my troubles or watching crummy TV.  Those that are of good health, will love this course just as much :)  Vicki herself, is suffering with MS.  This is just as wonderful for her to fill her life with something so meaningful,  and it is something that she was born to do.  Thanks Vicki...we can't wait!...When you view Vicki's blog, you will see what I am talking about!

Congratulations and best of luck to Ron & Vicki!

Sorry this blog went on forever.  I have more to say, but will hold off for a few days.  XO to everyone :)

Wwwhhhhaaaaa.......

Ugh - such a miserable day today!!  I had an appointment at the University of Miami, which ended up to be a total waste of time.  Don't ask me why, but I spent almost the entire appointment crying like Lucy Ricardo...so embarrassing!!  I didn't see that one coming and wasn't feeling the least bit emotional or anxious before meeting with my doctor.  I did ask her what lies ahead for me and she said "why would you want to go there??".  Her answer caught me off guard and I stuttered and kind of shrugged.  If I had to do over, I would tell her exactly why I want to know....it's been six long and miserable years and I want to know what to expect...is that unreasonable?  She saw no reason to tell me anything upsetting, but I think it is unprofessional to ask me why I would want to know.   So frustrating!!!

After inquiring about support meetings, my doctor said they have a support group that meets in their offices.  Why didn't she tell me this two appointments ago???    In fact, the camera crew from Katie Couric's nightly news, filmed their last meeting.... missed my fifteen seconds!!! I'm not sure if I would go to the meetings since they are in Miami, and the meetings last two hours.  I know how much I can handle, this sounds like too much.  I bet they don't even have a waitress!

There is no question that I would completely lose it cognitively by the time the meeting would start.  I'm going to have to give it some more thought.  On the other hand....if my adrenaline kicks in, anything could happen.  If that were the case, they would no doubt eliminate me from future mailing lists....or buy a karaoke machine for future meetings...depends on the "crowd".  It could go either way!  Now that I think of it, maybe I'll give it a try...LA LA LA LA LA LAAAAAAAA.... Islands in the stream, that is what we are...something tells me that I would be coming home with a note pinned on me, saying I was disruptive in class.  (Erica, remember the Elmar Seminars??)  I talk a good game, but I would probably leave on a gurney!  I'll keep you posted on this monumental decision :)

After speaking with Dr. Rey, I think I am going to switch cardiologists and my sleep disorder doctors.  There are more and more things going on. It is all so complicated with overlapping issues.  Dr. Rey disagrees with my cardiologist regarding the appropriate time to do the aortic resection and valve replacement. The aneurysm is 4.5 cm and it is her understanding that this is the time to "go in".  My cardiologist says 5 cm.  This discrepancy is one of the reasons I am thinking of checking out the new cardiologist.  The trauma from this surgery would worsen my condition tremendously, and this would be permanent.  Because of this, I'm holding off until the last minute.

I'm really surprised to be writing.  It was such a downer day ~ didn't plan on getting on the megaphone to spread the word.

Two little ditties (Dina) I wanted to mention.  Since I randomly mention different friends and family, I feel like I should have some kind of attachment listing everyone I mention on this blog, along with their pictures and bio!    Kind of like the wall at the post office!   Hhhmm, who would be the "most wanted"?????  Who wouldn't be?????

Another thing that I would love to do, is to have another blog using a different name....maybe I would use Lucy Ricardo, since I was channeling her at today's appointment.  There is so much more I would love to share, but just can't.  Either because it would be TMI for a well person, too upsetting for some family members, or the fact that some family/friends could/would be offended.  These are things that other very sick people would be able to identify with....I just can't go there publicly.

Well Ricky, I did more spainin' than I expected tonight. 

Dear Meg....

...instead of returning your FB message, I'll get crackin' with the blog...I can take a hint!

I have said in the past that I try to post every couple of days.  The past few have flown by.  I was surprised when I realized that the last entry was on Wednesday.

Hhhmmmm, what to say, what to say???

I have been pretty much down and out the last few days.  My highlight (and demise :) ) was another marathon phone call....actually two calls ~ a biathlon, and they were back to back.  I felt like "Ernestine"...."is this the number to which you are speaking"...I know, that is for the seniors!  My kids are probably saying, there she goes again...


First I was on the phone with my daughter-in-law, Danielle, for over two hours.  It was SO much fun!!  I love catching up... baby talk, not to each other, about the babies :), celebrity gossip, tv shows....we try to keep our conversations cerebral ~ that's how we roll :)


Immediately after Danielle, my son Chris called, but we were only on for a few minutes.  THEN, about fifteen minutes later, Ceal called.  I saw her name on the caller ID and had to pick up....fast forward to four hours later....poor me, poor Ceal, poor me, poor Ceal, pour me.....a drink!!!  I was destroyed.  I have a feeling Ceal was too.  We had so much to catch up on, the new topics were spewing from both of us simultaneously.  In the end, I had to decide ~ life or death, I opted for life... I told you I'm cerebral!  The toll collector was sitting on the edge of my bed waiting for Ceal and I to get over each other.  He is ever present poking his index finger in my chest. 

(ADD alert...I remember my first phone conversation with Jimmy - SIX HOURS!!!  ...he could never accuse me of false advertising!)


Anyway, that was rough and probably the reason I have been worse the past few days.  Everything gets so much harder.  

Ceal reads this blog and I was telling her how serious I am about my Microfiber frenzies, and she gets it :)  I really wanted to pull them out the past few days, but the toll collector, well you don't want to know what I said to him...I think I'll take my Sunpass off of my windshield and attach it to my forehead...

My "normal" is bad enough, but when I have rough spells, it is really difficult.  I want to bust out of here and run to the soundtrack of "Chariots of Fire", but sped up to "Chipmunks" speed. The isolation/silence is really intense.  I wish I could have company, or go running around doing errands.  At times like this, it is best that I am alone, as much as I hate it.  I need the time to not expend any energy whatsoever.

Now I am feeling exactly as I did when I first got my drivers license. I loved it when my mother would ask me to go to the post office and drug store at "Mainline", pick up lunch meat (sliced extra thin) at Cooks Market, etc.  Somebody, anybody...c'mon, just give me a list!!!!  It's funny, because these are things I dreaded when I was well, such inconveniences!!!  Now they are like little vacations!  Any local errand is an event...sometimes make-up & perfume worthy!  Of course, in less than an hour I am back in my pj's and horizontal ~ but still with the make-up...ready for my close up..


After all these years, I know when it is safe to expend energy.   Obviously, the worse my symptoms, the more intense the feeling of isolation, loneliness, and silence.  It is true that silence can be deafening, incredibly so.


I am looking forward to Easter next Sunday.  We will all be going to Chris and Danielle's.  It is much easier for the kids, especially with Maks' nap time.  Luckily, I have their living room sofa to shuffle off to (I'll call the sofa "Buffalo"), when needed.  Since last week wasn't the best, I didn't make it over to see them.  Again, I'm hoping this week, but definitely on Easter.  I think I'll stop telling you guys I'm hoping to go over, and just report if and when I do.  Also, I bought their Easter candy a little tooooo early....if ya' know what I mean ...

It has been eight weeks, since my first post.  When I began writing, I intended to merely keep my family and closest friends up to speed.  After reading this post you will find it hard to believe that I rarely answer the phone, but it is true.  Almost every day is a bad day. 

When my friend, Shari, started her blog, I found it to be incredibly informative.  Between the two of us, we're rarely up to phone calls.  Shari's blog brought me up to date and answered all of my questions. My intention was to do the same for my friends and family.  Very straight forward and simple....well, maybe not so straight forward! 



Due to the feedback I received, almost immediately, my intentions took an unexpected turn.  Several friends told me that they were sharing it with friends of theirs that are very sick, both physically and emotionally, and how much they were getting out of it....what???  I then felt a sense of responsibility to keep the blog going.  From the letters I have received, it appears that I am helping others in some way. It is embarrassing for me to put that last sentence in writing. 

I never saw this response coming! There have been days when I wondered if writing the blog was a blessing or a curse.  If I am helping others in some way, it would obviously be a blessing.  Honestly, I do not know what anyone would get out of my "to infinity and beyond" chats, but I am not going to question it.  This blog has evolved in to an incredibly unexpected and rewarding experience for me.  Thank you to everyone who has encouraged me with such heartfelt letters.


Meggy, thanks for the nudge...I needed that tonight! XO

Ramblin' Rose...

Last Friday night was so exciting...but, I've been a little conflicted between being happy that I had the "moment" and being discouraged that it was so short lived.  In the end, it really didn't take too long for me to come to the realization that I really am happy that I actually escaped from the Coral Springs Correctional/Psychiatric Facility, put on make-up...and yes, even flat ironed my hair.  I'm also happy that I didn't get seashell earrings or a tattoo :)...the Keys really makes you come out of your sea shell.  I think we left just in time! 


Friday night was short lived, but I can't stop thinking about it.  It has been years since I had a night even remotely like that.  Usually, we go out to eat in our very immediate area, within three or four miles, and we have to get in and out.  Sometimes, that is still not fast enough with my old ticking time bomb body.

I have a beautiful picture of the  Islamorada sunset as the wallpaper on my phone ~ so I see that a zillion times a day.  AGAIN, with the making a short story long, in the end, I feel confident that there will be another trip to the Keys for dinner.  No rush, whenever it happens, it happens. Surprisingly, the thought of going again scares me more than excites me. I can't imagine lightening striking twice, but you never know.


With the exception of Saturday, I didn't physically pay for the getaway.  That is about as shocking as the fact that I went.  Usually, any out of the ordinary physical exertion would take its additional toll for several days.  Yay, no toll collector...I hate that guy!  The minute we got home, I returned to my usual "lockdown" and have pretty much maintained that same 'ol, same 'ol.

Yesterday, I felt well enough to go to Lowes, which is less than a mile from our house.  They have the WORST scooters.  I got on the first one and it barely moved.  I had to back it up, with that embarrassing BEEP BEEP BEEP - UGH!!!  I got on the next one and, by comparison, it was like a snail on Red Bull...escarGOt?? Not quite!  I think they amped up the horse power..sea horse power, that is.  I can't tell you how much I hate using those things.  Every once in a while, I'll go to the food store and just grab a cart.  It is ALWAYS a mistake.  

As I have said in prior posts, I have a lot of weight to lose.  I am dying to get out and power walk or exercise.  It is so frustrating to want to unzip this horrible body and step out and return to living.  I want out of this shell.  There are endless weight loss shows on TV and a large part of their success relies on physical activity.  I guess I am going off on a tangent.  One of these days I hope to write that something clicked and that I.....well, I had my jaw wired shut.  From Jimmy's perspective, I would be hitting two birds...   

...speaking of, on the way home from the Keys on Friday, I was talking non-stop...uh huh...  Every once in a while, I would come up for air and ask Jimmy, "what do you think?", "you know what I mean?"....things like that.  EVERY TIME, he said "what..what??", like I just woke him up...and he was driving.   Is it me or him?!?!?  Don't answer that!


One thing I wanted to mention is that I am really surprised at the number of pageviews this blog has had.  I know a handful of people that are reading, but 
they aren't checking in that often!  Since I started, I received two comments from people that I don't know, which was exciting.  I wish I could see all that are checking in and know the background stories of the ones I do not know.  


I've mentioned before that I haven't accepted my situation.  My life is pretty much divided in two... before I got sick and after I got sick. Two different lives, two different people. In my head, I am "so" before.  In reality it is like I am still straddling the line, even though I am firmly six years in to the "after".... maybe if the scooters were faster, I would cross over that line.  I have said that I do not have hope regarding my medical issues.  The progression has been steady and sure for too long.  With my reluctance to "cross the line", I wonder if subconsciously I do have hope and I am just digging my heals in...a work in progress.

Another way to explain it, although kind of morbid, is when you hear of a spirit that is stuck here on earth and can't pass on.  The person is obviously dead and has been for years, but they are caught between two worlds. That is pretty much the way I feel.  What is real is not the same thing as what I can comprehend, or willing to comprehend.

Every single night, I think of what I will try to do the following day..and I mean EVERY night.  Then, the following day, I'm unable to do a thing.  You would think I would get it...I feel like this is a blond joke!  I don't know, maybe the hopeful thoughts and wishful thinking of doing something the next day keeps me from getting too depressed.  I'll go with that for now :) 


I'll say tonight's (same every night) wish out loud - tomorrow I hope to see my precious grandchildren's faces....that is something more beautiful than the Keys sunset  XO

Staycation Paradise....

...and paradise it was!  Between my new sunset picture and my playlist song "Cheeseburger in Paradise" (I know major cheeseball, but I couldn't resist), it is obvious to you guys that we broke out of this joint!!!!

The weather couldn't have been better.  It was SO beautiful, perfect temp's and slight breeze.  With my heat intolerance issue, I was a little nervous about how it would be.  No problemo!


When we got there, Jimmy dropped me off at the front door.  The band was playing by the beach - Neil Young's, "Heart of Gold" - so far sooo good!!!  They went on to play "The Weight"/Band, "Norwegian Wood"/Beatles..  I know, who doesn't know that?!?.. Tom Petty/"Runaway Train",Crosby, Stills & Nash,  "Southern Cross" ~  Was this a surprise party for me???  This was all too perfect not to have been prearranged!!  

My adrenaline was through the roof before we left for the Keys, but at this point, I felt like I could have done cartwheels....w/o spilling my drink :) SO EEXX...CIIITT....TED!!!!  I swear.. I was "this close" to fist pumping...God forbid.....


Out of control adrenaline rushes are part of my autonomic issue.  In most cases, it is not a good thing.  This time, it is what pulled me through the night, no doubt...

By the time Jimmy got to our table, I already had my Captain Morgan & ginger ale....every minute counts!!!   The waitress (can't remember if her name was Ginger or Marianne) came over and asked Jimmy what he wanted to drink and he said "anything you're bringing"....that's what the Keys does to you....and that's how bad we both needed this staycation!

The view was spectacular, no surprise there.  The feeling that I get when I am in the Keys is impossible to describe. Obviously, they are beautiful, but I just don't care for places that are very commercial, or God forbid, glitzy :(  For having nothing fancy to offer, the Keys has it all...all that I want.  That is exactly the appeal for me.   The simplicity of the Key's natural, untouched beauty is all it has to offer..love it or hate it... and I love it. 

South Florida is like an entirely different world from the Keys. It's hard to believe that the Keys are so close, yet so far.  SUCH AN ESCAPE!!!!!   I don't think I have ever used this word, but.....yes, it was GLORIOUS!!!!!  FEET IN THE KEYS SAND GLORIOUS :)  I can't tell you how many times I started to cry throughout the night.  It was all very emotional for me.  

My entire family feels the same as I do about the Keys (my parents lived there for close to twenty-five years), but I don't think that even they could really, fully understand how much this meant to me.  My need to escape my life is overwhelming.  Last night felt like a dream....so close to being normal again.

To think the Keys are only two hours from home...I have to manage to get there whenever I can.  It is just so scary to think of getting there then being too sick to stand, sit, lie down, and be stuck two hours from home...timing has to be perfect!  There is no room for error.

The waitress was slow as molasses - more perfection!  No one is in a rush in the Keys.  I told her to stop asking if I wanted another drink, but just to bring one if my "plastic cup" was empty!   OKAY..disclaimer here....it is extremely rare that I have a drink.  Especially since I have gotten sick.  I have no interest and have water with lemon when we go out to dinner.  HOWEVER, when in Rome....


Contrary to the text message I sent out to a few, I really wasn't drunk ~ just excited!!  I was in the "Don't Worry, Be Happy" state of mind.  Although (for the old timers), I had Foster Brooks hiccups that wouldn't let up .... go figure..

It is so beautiful and relaxing just breathing in the Keys air.  No one is dressed up, everyone is casual, comfortable and couldn't care less what anyone else is doing or looks like.   The shops up and down Rt. 1 look like they were vacated years ago....it's just the look...and I'm all over it!


Without question, my adrenaline from the night before was responsible for this quick visit to heaven, along with the perfect forecast - 83 degrees, pain pre-medication and medication for my stomach nerves/gastroparesis.  If Jimmy asked me to go again today, I would have had to say no....the adrenaline has left the building. Last night was the craziest fluke - like I was hit by lightening.


Unfortunately, once the summer hits, it will be too hot for me to eat dinner on the beach.  I'm hoping that I'll be able to squeeze another "staycation" in between now and then...I'll have to find great places to go, on the water, but "under air". 


I felt like Cinderella, when we left with the convertible top down...perfect ending.  When I got in the house around 10:30, I hate to admit how happy I was to see my bed.  I am back in my prison garb...for now.

In the meantime, I need to enlarge the sunset picture and put it on my bedroom ceiling...after I put on make-up and earrings :)   note to self...get funky sea shell earrings and a tattoo..of the Conch Republic Flag :D


Don't mind me...I like mine with lettuce and tomato, Heinz 57 and french fried potatoes....fistpump...

Woo Hoo!!

I am dressed, wearing my Kino sandles (you would have to be Key's frequent flyer to know about them) and ready to go to Islamorada!!!  SO EXCITED!!  I decided I want to go in the convertible and forgo the massive handicap minivan.  I'm bringing every imaginable pillow and blanket with me.  I'm taking a HUGE risk, but not stopping to think twice!  Oh, I better pre-medicate..almost forgot!  If we don't hurry, we'll miss the sunset...can't wait to report back...

Location, Location, Location...

I know I am completely delusional, but I am determined, which means nothing by the way, that we are going to the Keys for dinner tonight.  Going to the Keys would be the same as getting some type of high tech treatment, specific to my problems.  The best possible form of therapy...aaaahhhhh


Today, I was horribly sick, which makes this even more of a joke.  I found the perfect restaurant in Islamorada, "Morada Bay Beach Cafe",on the Gulf side with tables in the sand. (Reminds me of the old "Sandy Shoe" restaurant that we all loved and miss down here, but better food!) The sunset would be beautiful and I could walk in the water.  If Jimmy were awake, he would laugh and say "yeah, right!".  Now, if only you could all come too. Why not???.... in my delusions you can :) YIPPEE!



I've said that I still haven't "accepted" my health issues, after six long years.  I guess this proves it!  You would have to see me and know my day to day struggles to know how outlandish this is.  


The car ride is slightly over two hours.  I would have to be reclined in the seat for the ride to and back.  It would help if I could use the power wheel chair to sit at the table, since it reclines.  When my autonomic issues kick in, from not being horizontal, reclining the wheel chair would buy me more time.  

Unfortunately, I would be taking a huge risk, sacrificing the w/c for the chairs in the sand.  I could just see the waiter come and ask Jimmy "where did she go?" and Jimmy would have to say "you're standing on her", where I would be in the fetal position, on a beach blanket - classy lady! ..but then, have you ever seen the locals in the Keys?!?!? Honestly, if you have ever been to the Keys, you would know what I'm talking about!!  

I can't believe I am so excited about this imposserous (sp?) idea....I'm not going to question it.


We are celebrating our 30th anniversary this September.  Naturally, I would love to take a beautiful vacation someplace far away..Tuscany.  Due to my very specific health issues, plane travel is not an option, even a short flight. 

That leaves Florida, which is lucky for us.  There are a few places where I would love to go.  Cheeca Lodge in Islamorada specifically.  (Actually, Little Palm Island is my tip top of the list, but the prices are through the roof.  I think it starts at  approx. $1,500/night not including food! ..but each couple gets their own private cottage on the beach, on a private island that you need to take a boat to get to)  It is impossibly frustrating, since chances are so great that I would have to stay in the hotel room, wherever we end up.  Ooohh, if only I could get out on parole for a few days in September!  Dreading the anniversary.  It should be special, but I know it can't be.


Well, back to my delusions for dinner on the Gulf tonight.  If I get there....I know, I know..funny joke....I will post pictures of the beautiful Gulf sunset on FB.  I thought I was awake, now I'm thinking I am sleeping and dreaming...yeah, that must be it....

Nutshell....not so much...

Missed posting on this blog the past few days, but it has been a rough spell lately.  It's one of those things that I don't know if this is my new normal, but it kind of is (more than kind of) looking that way.  In fact, I think I mentioned this in a previous post.  When my symptoms worsen,  I have to re-adapt emotionally. It usually take me a while to readjust.  I'm in that space right now.

The physical symptoms/cognitive issues have been heavy.  However, I was able to get out of the house for around forty-five minutes today, to pick up a few items from the food store.  Again, it was like going from the Wizard of Oz black/white inside the house, to beautiful  3-D technicolor (maybe I'll get myself a dream coat...sounds like something I could find at Steinmart...or Bob Mackie Wearable Art from QVC ....QVC'ers would know how yuck, yuck, yuck that is!!)  Cathy and her Amazing Technicolor Dream Robe would probably be more fitting.

I don't know if I will ever be able to tell you about an outing, without the Wizard of Oz correlation.  It just hits me in the face, as soon as I cross over to the other side!  It is remarkable, like an entirely different world, just on the other side of my door.  Today was 83, slightly breezy and beautiful.  It is so rare that I get to enjoy our beautiful weather.  I can't put in to words how it feels for me.

Anyway, I know it definitely wasn't smart for me to leave today. Sometimes, I get so fed up that just I go for it.  Unfortunately, it causes a domino effect with my autonomic symptoms, which ultimately effects my BP, thus causing added pressure on my aneurysm.  

Today, I wrote to my cardiologist.  An e-mail that should have been sent back in December.   I need to keep him updated on my BP and its relation to my autonomic dysfunction. A miserable situation, with life altering consequences, post surgery.  That is due to the fact that I am a patient with overlapping autoimmune issues.  I would love to put my head in the sand...speaking of...

...I have to get to the beach.  One of these days, before the summer heat sets in. (one of my symptoms is complete heat intolerance ~ really, really bad)    I'll have to bring my beach chair and go to the beach around dinner time and just suck in the beautiful Florida sand, sea & sky, from sunny skies through dusk.  It is "Chicken Soup with sea salt for the Soul".  I am  thinking it would be best if I go alone.  Of course, I talk a good game, chances are this isn't going to happen.  I know Jimmy would love to come too.  My reason for not wanting him to come, is that he would probably get bored....on the other hand, my ticking time bomb body wouldn't allow me to stay too long anyway...but it would be worth the consequences.   Deep inside, I'm afraid I will cry and times like that I prefer to be alone.

Today is Thursday, and still haven't seen my grandchildren this week. At this point it is almost 3:00 am.  If I get to sleep soon, maybe I'll get over to see those beautiful faces.  I know everyone says that when they see beautiful babies, they just want to eat them up.  I REALLY need to now how I can do that without  hurting them......I would be like Ms. Pacman!!.....although my endocrinologist wouldn't be thrilled that I had ingested so much sugar.  When I say they are my Peeps, I really mean "Peeps" one pink bunny, one blue bunny and one blue chick!  (Gabby is my profile pic on FB)

Today was hard and I shouldn't have left the house.  Once back, I had to collapse and sleep.  My cognitive issues were horrible as well.  All day, I was thinking of the calls I need to make and e-mails I need to return.  I apologize to anyone I have not responded to yet.  I do as much as I can, when I can.  It bothers me when I can't get back to everyone.

This post was intended to let you all know I haven't been up to writing, but hoping to be back in another few days.    Hhhmmmm, not feeling the "nutshell" thing!!

Deja Vu...

....pretty much sums up my day to day.  Each day begins as a blank page.  Some days are pretty rough, requiring me to stay in bed and get as much rest as possible.  More often than not, that is how my every day is. For the most part, I am okay with it.....really...blank page and all.  This has been my life for so long now, that I am beginning to forget what my old life used to be like.  It was what it was and now it is what it is. I have acclimated myself to this new life.  This is still my life, just different.  No complaints!


Actually, I am usually thankful that I never have to be anywhere and I can just stay put where I need to be.  The occasional doctor visits are the only reason I have to leave and those days are not pleasant. 

On the flip side, there are days when I do get to write on the "blank page".  It could be, as you all know by now, say it with me ~ "MICROFIBER..ING",  doing laundry, making dinner and, if I am really having a better day, getting in the car and running an errand (rare). (I kinda' live up to what they say about Florida drivers)  Some days, I can do a combination of these things.  Yes, I'll pay a price, but most days I don't have the option to take the risk.  When I do have the option, it is almost always worth the price ~ no regrets.

Yesterday, I decided to go food shopping with Jimmy.  It is sometimes a hard decision to make.  When it is "iffy", I should know that it means stay put.  Obviously, I will never learn to react to the red flags.....still some denial.  As soon as we got in the car, I was absolutely miserable and knew why.  I should have walked right back in the house.  When getting dressed does me in, I have to learn to immediately get back in bed.

To make matters worse, I chose to walk with the shopping cart, rather than use the store's scooter.... beyond stupid.  I think I was so miserable that I went, when I wasn't well enough, that I just wanted to get it over ASAP.  Those scooters are SO slow!!!!!!  Everyone who really knows me, knows my foot is always on the gas pedal - flooring it.  I decided I would rather risk walking the store, using the cart to lean on, and getting out faster, than moving at a snail's pace and be away from my bed an extra half hour. Do I pick door number one or door number two???  Ugh - neither was an acceptable option.  Where is the trap door when I need it???? It was a miserable experience and I asked for it.


Today is Monday and I am hoping to write something in the coming days of blank pages this week.  I didn't make it over to see baby Maks crawling last week, so that is my priority for the week.  If I do, I'll be posting pictures on FB :D


I don't want this to sound depressing, because it really isn't meant to be.  Each day when I wake up, I have no expectations.  Because of that, I am rarely disappointed with my day.  If I need to stay horizontal all day, so be it.  At least I am home, in the comfort of my own bed.  On the upside ~ the days I get to function, whether it is cleaning, talking on the phone, cooking, etc., it is ALWAYS a very, very pleasant, unexpected surprise.  On those days, I end on such a good note and it feels great.


I've written more than usual the past few days.  So, it looks like you will all have a front row seat to see if I write on my blank page days this week.  If I have a productive day, I'll be using a permanent magic marker because I'll want the world to know that I have something to brag about!!  I'll be IN YOUR FACE, telling you that I'm "all that"..and yes, and a bag of chips :)


I am learning so much through this blog, it amazes me... and I am happy to say that it is ALL good :)   


Looking forward to some good, positive posts this week - cup half full.... ...CHEERS!