All Aboard the Runaway Train...

Hi all...I'm back with requests for discussions from two friends.  One serious, one not so much...Dina Ellen :)

Before I take off like a runaway train, I want to tell you that I know this blog experience isn't really "on track" (my mother disagrees) ...can't help it!!  When I began, I was initially hoping to keep my closest friends and family informed, since I am rarely on the phone.  As it started to evolve and I received incredibly encouraging letters, specifically from those that are also very ill, I wanted to make sure to walk the fine line between brutal (I know what you are thinking Phil!!!) honesty and being too lighthearted.  

For the longest time, I have wanted to find someone dealing with issues very much like my own and read about how they cope.  I thought this would help me gauge whether I am feeling too sorry for myself or doing the best I can emotionally, under the circumstances.  I have no frame of reference.

In the past, I have read about some who are very ill.  I could read between their sugar coated lines and know I wasn't getting the whole truth.  I could never seem to find a story about someone like me, the good, bad and ugly, to know if I am dealing with it in an appropriate way.  

On the flip side, I recently read a blog of someone with similar issues, but this young 35 y/o mother of a two year old, is horribly sick...much sicker than me.  I found that her tragic story, even with her amazing attitude, was too much for me to handle.... very upsetting.  I guess I am afraid I will eventually be in her same physical state.  Whatever the reason, I now know that I do not want to read about anyone sicker than me, that's a definite!  Just too upsetting.  I can cross that off my non existent to do list :)  Note to self....start a list with this on it, then cross it off.

So, this all leaves me with a dilemma regarding how much to share with everyone.  My problem is that I want to be honest, but I know if I am really giving it to you every day, it would be a never ending pity party.  That wouldn't be good for me emotionally and it certainly wouldn't be enjoyable to read. It would sound like a broke broke broke broken record...and you would want to slam the "needle" with a sledge hammer (I know...you have to be old to understand)

On the other hand, I learned from the times I read the sugar coated stories, where I was left disappointed and without answers, that I do want to be up front about what I am dealing with.  For the friends and friends of friends who are reading this, and are very sick, I don't want them to take a look and think it is another one of those sugar coated stories, or not believe that I am where they are..because I am.

I sort of went over this before. I am going to take a moment, from time to time to be serious and honest.  For those that are spiraling downward emotionally, I would love to have a blog that they could relate to, and realize that they can be very, very sick and still find a reason to smile - not all the time ~ that is not realistic...but a smile here/there goes a long way.....a laugh-out-loud is priceless...believe me, I know.  There have been times when I was watching something on TV that was very funny and, alone in my bed, I would "LOL" and it surprised me, looking behind and around me to see where that laugh came from...who did that???  When I realized that something actually made me laugh, I couldn't believe that my solemn, lonely barrier, during very depressing times, had been broken through.  I know it can be done!!!  You sickies out there - PLEASE BELIEVE ME!!!

Looks like I took off on the runaway train prematurely.  How can I say at the beginning of the post that I am not going to do that???  I swear, I mean it when I say it...hold on, another runaway train is about to board...."pardon me boy, is that the Chit-chattanooga Choo Choo .... HOO.. HOO....."

My friend, Vicki, specifically asked me to talk about the loneliness/isolation and solitude that we deal with.

This aspect of being chronically ill/primarily housebound is maddening.  I can't speak for Vicki, but I can tell you how it has been from my perspective.  Everyone who knows me, must wonder how unimaginable this is for me.  I never sat still for a second, prior to getting sick...always on the run...and if I say so myself...I was fun ~ damn it!!!!!

Over the past few years, I purposely isolated myself from friends and family.  It is hard to explain, but I guess you would have to imagine having the worst flu ever - so, so sick you can't believe you are not dying. Everyone has been there/done that.  Obviously, you would recover in a few days and that would be that, until next year.  

In my case, this is my life every day.  The bad flu analogy applies every day, it is just a matter of if I have a few better hours (never more than one or two good hours), or times where I feel like I can't take another second and wish it would all end.  As you know, when you are that sick, there is NO way you are answering the phone..why would you?? 


My (mensaMaks started crawling yesterday, so I am hoping against hope that I can get over in the next few days ..kiss, kiss, hug, hug)


I want to simply get in the car and drive to the beach, spend the day with my beach chair half in the water and soak in the sun with a great book, I want to get in the convertible with Jimmy and drive to the Keys and drink (literally & figuratively) it all in, I want to pack my bags, jump on a plane and spend a few weeks back "home" visiting all my lifetime friends, I want to go to Homegoods, I want to help Danielle with the babies EVERY DAY, I want to make a delicious dinner and have everyone over, I want to go to church on Sunday..I want...I want...  I don't want to watch TV, I don't want to check in on Facebook, I don't want to live in silence, I don't want to look at my bedroom ceiling, I don't want to think about everything I'm thinking about to death. 

It all comes down to my restrictions, and there are too many.  Reality is that I'm not going anywhere, I'm in bed 80%-90% of every day and too sick to catch up with friends on the phone on a regular basis.  So - there it is (unfortunately not in a nutshell!!!) solitude and isolation.  How I cope, I couldn't tell you.  It has been six years and no light at the end of the tunnel.  Again, the occasional smiles and laughs are monumental - love it when it happens and pat yourself on the back!  If you don't allow yourself to smile, then you need to kick yourself instead!!


For those that are physically able to start symptom friendly hobbies - that is great.  You might be surprised at what you find when you investigate reinventing yourself...I know I was...

...which brings me to the good news.....writing this blog has lightened the loneliness/isolation load to a large extent.    Still amazed how unloading my life , at your expense, has helped me, but it does.  I guess I feel like I am talking to you all on the phone...a really long phone call...and you don't get to speak...WOW, this is like me talking on the phone!!  Life is still passing me by with everyone I love in it, but for now the blog is getting me by.


Now for my second friend request... my sweetheart, Dina Ellen, is not as sweet as I thought!!  Dina is my amazing Florida friend and originally lived next door to me, until she had to move on up, like the Jeffersons.  I was destroyed when she moved...even though it was only two miles away :(  still too far!!  Since then, we moved and are still only two miles away in the opposite direction.  

Yesterday, I wrote to her looking for recipes and I told her how much I miss her, but that she cannot see me, since I am so overweight (Dina is the "b" word....beautiful).  Dina freaked out, as I would have if the tables were turned.  Anyway, Dina wants to come over, stay a half an hour, go home and wait for her "shout out" on my blog, blaming her for my nosedive.  Dina doesn't want my family to get all the credit and "ink" :)  DINA ELLEN WEISS ZIEGLER.....COME ON DOOOWN!!!   Tell me all of your funny stories, run me in to the ground...it will be worth every second...I'll put my Vicodin in a pez container..JUST KIDDING!!!!!!!!! not

I guess I came full circle from Vicki's topic of isolation to planning for Dina to come over and inevitably making me laugh to death.  My mother came over yesterday afternoon and Tuesday afternoon, so far this has been a banner week.

Chit-chattanooga choo-choo, won't you choo choo me to bed....  hopefully, I won't stop to "chew chew" between the office and my bedroom...

Big news on Trey Love...his PET scan and bone marrow tests came back clear...WOO HOO, CHOO CHOO HIM HOME :)

RED FLAG....boring post!

I hope everyone had a great weekend and that the weather is starting to warm up back home.

For me, today (at this time, it is actually yesterday) was a pretty good day.  I was in a little bit of a microfiber frenzy, which is always a good sign.  A little later, Jimmy and I decided to go and get something quick and cheap to eat, then go to the food store - very ambitious day!

Deciding where to get something to eat was one of those "I don't know, where do you want to go"..."I don't, know where do YOU want to go"  "I asked you first, just name one place" "No, I can't think, just say a place"  OY - we can waste forty five minutes on this tennis match!  ...your serve

Since I am rarely out of the house, I can't tell you how incredible it feels to walk out of my front door in to this beautiful Florida winter weather.  On the inside of the door, it is like the Wizard of Oz in black and white, on the other side, it is like the Wizard of Oz in color.  Feeling well enough to walk out the door and being hit in the face with this gorgeous weather is indescribable .... I LOVE IT!

...speaking of the Wizard of Oz, when you hear where we went for dinner you will all be thinking "if she only had a brain"....

We went....dry heave....to the Golden Corral Grill ~ STUPIDO!!!!

I'm not sure if they are up north, but let me say, it was most definitely a surreal sitcom experience!!  INSANITY!  It is obvious that the writers from Saturday Night Live have never been, or there would have been a skit about this Corral experience, a loooong time ago.  OOHHH, I would love to be part of the writers sitting around, bouncing ideas off each other for this one.  No one would get a word in edgewise....no really....

Jimmy dropped me off at the front, since the handicapped spots were taken.  I walked in to the vestibule.  Once inside, there was a door on the left to enter and a door on the right to exit.  When I walked up, there were three people ahead of me ~ no big deal.  Jimmy came in and said, "you know the line goes on forever once you're inside this door?".  I looked around the corner and almost died.  It was like the line at Disney's Space Mountain (I know I'm dating myself) at the height of the season.  The roped off "chutes" to follow back and forth, and forth and back, to and fro, and fro and to, four times before you get to the register.  My jaw dropped...are they giving away gold bricks????? or yellow brick roads???

Now since I am so overweight, I can say this...everyone was huge (me included). Are you saying "if she only had a heart"??? I didn't realize that this place was a ginormous buffet. I expected a cafeteria style "grill", with steak, hamburgers, grilled chicken sandwiches and a salad bar. There must have been a sign outside saying "There Is No Tomorrow", because everyone in line was licking their chops and drooling....they all had their eye on the prize....make that, prizes... It was beyond belief. No doubt they thought I was the hungriest of them all, since my jaw dropped....and yes, I was speechless.


So, when I realized that we would have to wait forever in line, I asked the woman in front of us "Is it really this good???" and she said OOOOHHH YEAAAAAAAH...I thought she was going to get whiplash from nodding "yes" so hard.  I found that really, really hard to believe, but my curiosity was getting the better of me.  I am such a sucker!!!!!


Waiting in line is not an option for me and there would be no way to navigate around a gazillion people with my wheel chair.  Soooooo, I DARED to walk over to the exit door, hoping to find an employee to see if there was a place I could sit, while Jimmy waited in line.  Honestly, I can't believe we even got to this stage without turning around, since there were so many red flags. 

When I went to open the exit door, a cop, YES a cop , not a security guard (I have never been to an eating establishment that had any kind of security, no less a cop??..another red flag) , stopped the door with his foot and wouldn't let me in....WHAT...am I on Candid Camera (old timers) or being Punked (kids)???  I told him I cannot stand in line and asked if I could sit somewhere, until Jimmy gets to the front of the line.  Of course, this policeman didn't have the authority to allow me in and had to get a manager to approve this wild, crazy, over-the-top request. I'm surprised he didn't call the chief of police....although, maybe that's who he was...or was he the Wizard????...he didn't seem to want to make eye contact...

Finally, I got in!  ...just happy to get a seat. I was now on the "other side".... meaning the "dark side".  I looked around and could NOT believe my eyes.  There were a zillion people clamoring around miles of buffet stations.  They were like frenzied human bumper cars....or flying monkeys with blindfolds, holding dishes filled with ooorrrreeeeoooossss...

FINALLY we got to our table....why, why, why did we ever consider going there?????? Why, why, why didn't a house fall on top of me????? Please, please, please let there be gold bricks.....

Now it was time to check out the endless stations.  Everything looked deeeesgustin'.  I thought we would walk in, get a hamburger, then off to the food store.  Well, the only thing on the planet they didn't have was....yes, a hamburger!!!  You name it, they had Asian, Italian and Mexican stations, as well as grotesque looking fish and miles of unidentifiable delights.  Just think, if we stayed home in black and white, what Auntie Em would have prepared for us :( 

The worst thing was that when you decided what you wanted to eat, you had to get in line AGAIN!!!  Midway through eating, I started to get pains in my stomach.  I have an upper GI issue where my stomach doesn't get the nerve impulses to digest food and can be very painful.  Not sure if it was the food or the gastroparesis.   I'm putting my money on the food being the culprit. 


Everyone in this place was so serious.  They were all on a mission.  But I guess anyone would be if you believe there is not going to be a tomorrow :)  When I brought my plate to our table, the people all around me were checking out what I had on my dish - as if I might have uncovered something that they missed!!!  I wish I had the co..co..co...courage to tell them to MYOB!!!  I swear, it was like I was on another planet.  Jimmy and I were dying.....actually, we were diiii-yyeeeennggg. 


So, since I had to wait in line at the "stations", I couldn't go to the food store with Jimmy, even though I would be riding the scooter.  This traumatic :) experience sent me in to a nosedive.  The food store trip would have been impossible and we would have had to leave mid-way, so Jimmy returned me to black and white....where my stomach pains continued for hours.....it seemed Jimmy was feeling the same sickness in his stomach - ugh!!! 


After I came home, I received a call from my son Phil, which was really fun.  He is just north of San Fransisco.  It was fun to catch up and we were on the phone for a long time.....good times :) Of course, I spent the first twenty minutes describing the Corral insanity to him - poor Phil!


See, I told you this was boring.  I cannot believe that I have wasted your time with such a nonsensical post or that it is going on 6:15 am ....there is no place like bed, there is no place like bed.......off to see the wizzzzard....

Don't forget Trey Love - join his FB page....you won't regret it~

Trey's story...

I'm disappointed that I couldn't get the link on the blog, but you can watch the video of Trey's story at 6abc.com and enter "Trey Love" in the search box.

Cup Half Full...

Recently, I received a text message from one of my "imaginary" internet friends.  Vicki is also chronically ill with issues very similar to my own.  Discouraged with all that she is dealing with, and no longer participating in life to the extent she would like, Vicki asked me if I ever feel sorry for myself...

...good question.  I hate to admit that I do.  Not all the time, but it doesn't take much for the tears of disbelief to start flowing.  As I told Vicki, I am so disappointed in myself for allowing these feelings to come through.  I have been sick for six years. For most of that time, I was grateful that I didn't get sick when my kids were young, that there are people in worse shape than me, etc.  Lately, I have noticed that those thoughts of gratitude have been fading.

It is amazing how therapeutic putting your thoughts in writing can be.  When I wrote back to Vicki, it was kind of a wake up call for me.  In my typical fashion, Vicki asked me a "yes or no" question, and I wrote a full page response.  What is it about me?????...don't answer that!

While admitting to Vicki that I do have the occasional whine & dine pity party, I also told her about the flip side...kind of going back to my old thoughts that there are so many others dealing with worse things. It is funny that I kept that pushed way in the back of my brain, until I wrote my letter to her.

Just this past week, I have heard of heart breaking stories from friends.  These are some examples of why I need to remember how lucky I am.

My friend Patty Bagnell recently lost her beautiful 39 year old niece, Kelly Reed.  She was struck by a car, while crossing Rt. 130 in Cinnaminson.  Kelly  was a single mother.  Pat's mom also passed away a few months ago.

Our friend, Rosemary, is helping her best friend with a life threatening disease.  Although Rosemary is married and has a young son, she spends one weekend night staying over, helping her friend through the night.

Not to mention, the heartache you see just watching the evening news.  What is going on in Japan and Libya is unimaginable.....and I feel sorry for myself??  When I put it on paper, it doesn't add up....

It never occurred to me to blog about my discussion with Vicki...not until I spoke with my son, Chris, earlier today.


For those of you who are living back "home", you are probably aware of little Trey Love.  The heartbreaking story of a little boy with a rare cancer.  Chris worked with his father years ago and found out about this story through a FB friend.  As Chris was telling me this story, it took all I had not to burst in to tears. While we were still talking, I was mindlessly scrolling down my FB homepage and noticed that my friend Rick Leonetti posted a link about little Trey.  Frankly, it is too upsetting for me to watch and I didn't...couldn't.  

I am a complete computer moron and do not know how to share the link on this post.  I thought I had it, but it said there were "illegal characters". However,  I was able to post the link on my FB page.  If you can,  please check it out and donate to help make this little guy's final days as pleasant as possible.

So, thanks to Vicki's thought provoking question, I would have to say that my cup is not only half full, but flowing over.  

A side note to anyone dealing with heavy problems ~  From speaking to my psychologist about the self pity issue, she assured me that it is perfectly normal and not to feel guilty about it.   I do believe there are times when it all catches up with you and you have to allow yourself time to grieve your own losses.  The important thing is that you don't let it consume you....Vicki caught me as I was on the brink.  Thank you imaginary friend :)

It's Microfiber Time... You Can't Touch This...

Not a great day, but I had no reason to expect it to be.  I seemed to have hit a new low before Christmas.  Usually, it takes a few months before I accept that new or worsening symptoms are here to stay.  Today I just had to face the facts. UNCLE!!!...oh, I would much rather say WINNING!!! 

It is silly for me to come on and say that I had a "rough day", because my days are all the same....never ends.  Occasionally, I'll have a decent "vertical" hour here or there.  Today, I made soup and kind of pushed it by not breaking up the "prep".  It was stupid, I could feel my body crumbling, but kept on thinking (as all women say) "just one more thing".  It is so horribly discouraging to have to spend almost every minute of the day in bed.  I just hate it. It is like I am a kid being punished and sent to my room....hey, I thought this felt familiar!!....and it's not like I went to Riverton Park or the tracks, or anything...what, don't you trust me????      Oops - flashback - sorry!

I have only been sitting at the computer for a few minutes now, and already I feel like I am on fire and can feel myself diving.  For the second time today, "just one more thing"....


My March Madness excitement has expanded from Gabby's birthday & our visit with Alice and Tony.  I now have "Dancing With The Stars" too!!  I don't know who all is watching, but I have to say that Kirstie Alley knocked it out of the park last night.  Don't ask me why I care, but I was really excited.  She was so much fun to watch..plus I love that they danced to "Forget You"!  The Karate Kid wasn't too shabby either - such a surprise!  He'll have to remember to wax on/wax off his dancing shoes, before hitting the dance floor. (I know it was just the first episode and the wax on/wax off reference is already getting old!) I was surprised at how boyish he still looks...adorable.


Obviously, I am really sick of TV.  Dare I say, the "Real Housewives" shows are getting boring.  Those women are all so grotesque, it is a little hard to watch.  After all these years watching every single episode, I am still in shock at the way they operate.  They leave the "Boca Babes" in their dust!


I wish I could read, but my lack of "mental strength" makes it impossible.  If I were to pick up a book, I could read one or two pages, then it would feel like my head is about to explode.  You would be surprised at the energy it takes to concentrate, energy I just don't have.  Otherwise, I would be on a reading frenzy.  It's easy to get lost in a good book and before you know it, the hours  fly by - perfecto!


The diabetes diet has been a nightmare.  I didn't expect to struggle so much with it.  My real problems seem to be the obvious lack of exertion of any energy at all, and the endless boredom that steers me towards the kitchen.  Anyone that has dieted, knows the self hatred that comes when you fail.  It is so infuriating. Especially, when I announced to the world that  "I AM ON A DIET" (ADD alert - Erica, I said it like "I am in Exton"..inside joke, sorry) When I mentioned that I HAVE to lose so much weight to my endocrinologist, he just waved his hand in the air and said that under my circumstances it is going to be very hard. That was an understatement.  It is so important. I just don't get how I can allow myself to eat at all.  If you guys could see me...I look freakish :(

When I get my surprise decent hour here and there, there really isn't much I can do.  I am not allowed to exert energy or bend over, not to mention that sitting and standing is limited.  So, when those wonderful moments come, it is almost impossible to come up with the best use of that time. So....

....as most of you know, I have a history with QVC - they LOOOOVE me, they really, really LOOOOVE me.  Anyway, I check in from time to time to see what the latest and greatest is.  I know it is pretty bad when I have to tune in to QVC to find something to watch.  As you can imagine, they are master salesmen....and, as you know, I am the worlds easiest target!  Over the years, I have been restraining myself to a certain extent.

A few months ago, I got suckered in to buying a box full of microfiber dishtowels, cleaning cloths, etc.    I really do love them! (I miss me!!!)  AGAIN, making a short story long, when I get a good snippet of time, I'll dampen a microfiber cloth and go around the house wiping off everything in site.  Pathetic, I know, but it is my new fun.  It doesn't take long before I have to get in bed, but I do love that I accomplished something.  So, so lame, but it really feels good, well kinda' good.  I've had to lower my standards.

I wish I could think of something to do when I am up, other than checking in on the computer or stalking my kitchen.  Between being so restricted, and the heavy, overly drugged feeling in my brain, I can't think of a thing.


I expect tomorrow to be just like today.  If I'm lucky, maybe I'll have some microfiber time ~ hhhmmm, I wonder if MC Hammer bought hammers from QVC....

March Madness times two..

Unfortunately, I can't write too much tonight.  Just had to say that the princess par-tay was today!  Due to my condition today, Chris and Danielle were sweet enough to bring the party to our house.  It was much easier for me...and a necessity.


My second "March Madness" excitement for this weekend was that my Kimberton friends, (crazy) Alice and Tony came for a short visit yesterday (Saturday).  We have the happiest memories of spending time with them and the Marsh's.   It has been seven years since we have seen them.  A sight for sore eyes, to put it mildly.  It was a beautiful gift to see their faces and laugh with them again.

Hopefully, I will be able to write and get in to the March Madness excitement soon.


I love my family and friends beyond words.  With the state I was in today, there weren't many words, I kind of sunk in to the chair and observed :(


There is no question that it was worth every ounce of energy it took me to get through this weekend.  I can't get everyone's faces and smiles out of my head..and don't want to.  It was a sliver of heaven!


I'll be back when I recover enough to not write a "downer" post....
XO
The proudest "Mimi"

WWRD...

Wobin, you were wight as usual!!  I tacked on a few more songs to my already eclectic play list. There is a lot more where they came from, but I'm trying to restrain myself.

After looking at my songs, you probably thought "oooohhh,  eeeeaaaakkkss, ouch,  she has a multiple personality disorder".....so,    I Gotta' Be Me...no, no, no - not Robert Goulet ..I'm not that sick!!!!...and I picked one especially for you!   Thanks for the "tap on the shoulder"...XO

I got the music in me....

I finally figured out how to add music to my blog.  At the bottom of the page is the play list.  You can choose your own song, or if you prefer not to listen, there is a mute button.  I tried to keep the selections "middle of the road" - not too out there for the "seniors" and not unfamiliar to those in their twenties and thirties.  Let me know if you have any  special requests...like the Chicken Dance or the Electric Slide :)...on second thought, save them for your own blogs!

Not to sound cheesy, but "You Raise Me Up" was my first choice, because you all really do!  IT IS WHAT IT IS :)  Also, it is the song that Ryan danced the mother/son dance to, with my mother at his wedding...very, very special. I couldn't be there, but watched the dance, thanks to Lisa, Laura and skype! I will never forget it.

Fifty First Dates....

Not sure how many of you have seen "Fifty First Dates"...if not, it is a movie about a girl (Drew Barrymore) with strange type of amnesia. Each day, she has to start over, reacquainting herself with her life.  When she wakes up the following day, she has to start over again.


I know it is a streeetch to compare my life to the movie, but each day I find that all my health issues is "news" and I try to make sense of it all... Not happenin'... It astounds me, every day, like I just learned of my problems for the first time.  Today I found myself thinking about it, like every other day, with a feeling of shock.   How can I still be in shock and disbelief after six long years?  It baffles me and I can't seem to get beyond it. 

Not that I'm on a movie kick or anything, but Erica and I used to jokingly (and sometimes desperately serious!!) imitate the big guy (Michael Clarke Duncan) from "Green Mile".  For those who haven't seen it, he is a guy who would sense and absorb evil and illnesses from those around him (I think..it's been a long time since I've seen it).  Afterwards, he would make a sound and release all of the evil he absorbed, out of his mouth. It flew out in the form of swarms of bugs, dust, ashes, etc.  AGAIN, short story long.... I would love to do the "Green Mile"  aaaagggggghhhhhh to expel all that is going on within me.  It would last forever and I would have tears of relief and exhaustion streaming down my face.  

I guess it is not a good sign that I dream about such a fantasy.......but, if you have seen the movie, you might understand...or not :)  I KNOW ERICA UNDERSTANDS!!!! We would do it when we had exceptionally stressful days....  :0 aaaggghhh - get the picture???


Every day is rough, with very rare exceptions.  This has been a bad week, but they all are pretty much the same.  Today started bad, but gradually improved to the point that I was comfortable enough to get on the computer.  I decided to make dinner...again in many stages over the afternoon. Overall, I was in and out of bed for approximately two hours, mostly out of bed. When will I learn?????  I was up too long.  When I went back to bed, knowing I "overstayed my welcome" , I took my blood pressure.  It was ridiculously high, along with my heart rate.  I can't remember exact numbers off the top of my head, but I know my HR was 120.  This is caused by my autonomic nervous system issue and contributes to a more serious issue that lies ahead.  I will talk about that some other time. As for now, I just deleted a long paragraph about it.  Emotionally, I need to switch gears and switch to something more uplifting....


...if my mother were here, she would say "Gabriella, Gabriella, Gabriella" ...and, I have to say it works like magic :)  Speaking of our two year old big girl, the birthday party is Sunday. (I bet you are all so tired of hearing about this major event for me.....my March Madness)  I can't wait to see all the kids - big and babies.  It seems like I haven't caught up with anyone in person in ages.  Luckily, they have their living room sofa that I can use as my VIP area. I guess I need a swagger, or is it just "swagger"....what's a swagger??  So excited, even though my entourage will most likely be made up of stuffed animals....I guess they could call me the same ~ I'll fit right in.


It's been a hard day and I have to get back to bed.  So, as for tomorrow, I guess I'll wake up and say "sick?? who??? me??? wha' happened?????"

After posting this blog and going to bed, I turned on the TV.  The channel was already set for Bravo and, believe it or not, "The Green Mile" was on.  I hadn't seen it in over ten years.  As late as it was, I had to watch it again.  It was a beautiful movie and I needed that...I really needed that.  Soothing dreams here I come....

Update:  6:15 and I'm still waiting for the soothing dreams! I ran out of sheep, now I'll try counting my blessings...and, you all know who you are! XO

 

Happy Birthday Dabby Doober...

I have to take a moment to wish my sweet little Gabriella, Happy Birthday!!!!  

Today isn't a day that I can leave the house, so I won't be smothering Gabby with kisses and squeezing her as hard as I can.  Luckily, Danielle posted the perfect picture of our crowned birthday princess on Facebook.  I stole it and posted it on this blog.....Kate Middleton..whooo???...she's wishes....

I called and we sang "Happy Birthday" together on the phone...YUM!!!  (this much sugar can't be good for my diabetes diet!! ) When I was still singing, the phone went dead...hhhhmmm..what?? Gabby doesn't like the sound of a hummingbird singing???

So sad and disappointed that I can't handle the visit today.  It hurts beyond words.

At least I managed to steal a birthday picture to show off to you guys!!

Back to bed, I need my beauty rest for the big party this weekend...and apparently, I have to work with a vocal coach.... Do   Re   Mi   Fa   So   La   Ti   D..D...cough, cough,  DOOOOOOO


Virtual kisses all over Gabby's beautiful face!
              XOXOXOXOXOXOXOXOXO

Yadda, Yadda, Yadda....

I sat at the computer a few minutes ago, not expecting to "blog", but thought..why not?  Every time I write, I really have nothing to say.  Today is just another of the same, same and more of the same.

It was a heavy day for me physically and cognitively, which is my normal.  I did go out on the limb and exert energy mid afternoon - when will I learn?  I'm sure it is my refusal to accept this situation (ouch...eewww I said it again ), make that my condition.


If I feel like I might be able to pull something off, I always go for it.  These times are few and far between, but I feel like "maybe this time" - oy, sounds like Liza!  I'm obviously not a "wizah Liza".  I shoulda', woulda', coulda'..did I say shoulda'?.. stayed home.  There were a few things I wanted to pick up at the food store and thought I could go and come back before my body realized I left.  My body is too "wizah" - I get caught every time.

Honestly, I throw myself out there each and every time I think I might be up to being vertical for a while, going to the store w/o my power wheelchair, cooking when it is a bad day.  No pun intended, well maybe a little, but it is so hard to take this lying down.  I've mentioned to family and friends over the years, I feel like I am part of a science experiment. Kind of like a Twilight Zone episode - when is it going to end??????....I'm ready for the credits to roll....God knows I have been hearing the Twilight Zone music long enough.

Because of my energy "expenditure", I had one of those episodes where I have a matter of minutes to get in bed before I completely pass out.  The feeling is exactly the same as when an anesthesiologist injects the sedative in to the IV, just prior to surgery.  I know this will sound crazy, but I love it.  I drop dead asleep and it is a several hour escape.  The fewer waking hours, the better! Every time I have one of these episodes, it directly correlates with physical exertion from a few hours earlier.  If I stay on my back, as I should, these spells wouldn't happen.

For some reason, I have been having a harder time walking a distance farther than the handicapped parking spot, to the front door of a store.  My legs get heavier and heavier and so hard to put one foot in front of the other.  At the same time, it is more and more difficult to breathe.  

When I go to the food store, I use their negative mile per hour scooters ~not that their zero speed prevents accidents!   (I have some friends that wish that is all I ever drove :) )   (ADD Alert - I remember when Phil was a teenager, he got in the car, I looked in my rear view mirror and saw him sitting there with a hard hat on - so funny) If I go to a store that doesn't have scooters, I bring my power chair.  That is a horse of a different color...what color was Secretariat??? - I speed through the store  - my hair blows like Jennifer Lopez's in one of her music videos...well, that's really a deceptive visual!!

On Friday, I had to take it to Toys 'R Us to buy my granddaughter's birthday present.  It had been a while since I took it out myself and I was really anxious.  The ramp that slides out the side of the van is narrow, compared to the width of the chair. I get nervous driving it up and down the ramp.  The chair is intense, weighing 350 lbs and it reclines (I need that for my autonomic issue when I have to be on my back immediately).

The store was empty, which was perfect.  I found what I was looking for - great!  For a few minutes, I enjoyed being in the chair, not hearing the ticking time bomb inside of me that I would crumble soon, then I started getting really sick  ;(  ...anyway, I had to get a guy to help get the gift up to the register and get home ASAP. (ADD alert - after I paid the cashier, I wasn't looking where I was going and ran over a little boys foot with this monster chair!!!  I said "OOOhhh, I'm so sorry, I'm so sorry, I'm so sorry", as he was limping away from me as fast as possible saying he was okay - unfortunately, that was a classic "me" moment. I can't tell you how many people have limped away from me over the years, saying they were okay!!!)   So, lucky for me the store is right at our corner.  Regardless, I still ended the day having accomplished something - YAY!  These days are rare, but I I'll take what I can get.

Even though I hate waking up every day, and having to face another, there are still some bright points.  Writing this blog is definitely one of them.  Letters from my sweet friends is another.  My mother brought over a delicious pot of soup today - that was great.  Of course, I had to get in my "The Thinker" mode to watch the finale of "The Bachelor" - smart, smart TV :)  If anyone watched it, and saw Emily, you'll know why I now want to take lessons to become a southern belle ~ sweet..I mean sweet-tea-sweet, beautiful, overly feminine, and an INDOOR voice...I have a feeling Jimmy would be happy to pay for the lessons :)...for the indoor voice alone~ aaahh, men would throw their jackets over puddles, before I drive over them with the wheelchair...a girl can dream!..I'm sure y'all understand!

It is now 1:00 am, so tomorrow is my angel faced Gabriella's second birthday. Her birthday party (my March entertainment, over the top exciting day) has been postponed from last weekend to this coming weekend.  Aside from that, I am hoping that I can stop over for a short time tomorrow, to giver her big fat kisses on her actual birthday.  I'll pay, but this is a case where it is definitely worth it!   The real question, is if I can actually leave the house...to be, or not to be, that is my daily question. I have a lot of kisses stored up and ready to go!  If I am well enough to stop over on Wednesday, believe me, you will ALL hear about it....I'll be SO full of myself!!  ...and hopefully take a new birthday girl picture to post, since this is Gabby's pink birthday month on my blog.

Okay, I'm outta' here...as you were....

PS ~  Happy, Happy Birthday To My Sweet Friend and Yiddish Tutor...Dina Ellen ~ Mozel Tov and bottoms up with that twenty year old bottle of Asti...chug, chug, chug! XOXOXOXOXOXOXXOXOXOXOXOXOX

Yakety Yak...Don't Talk Back....

I didn't expect to be back so soon, but I am in the mood to talk....so happy that I cannot hear the groans!  I feel like I am stopping by your homes unannounced!

Not to sound like I just won an Oscar or anything.... but I have some people I want to thank....and, I'll stop before they start the music. As I have mentioned before, I am overwhelmed by the letters I have received.  Finding clear headed moments, while having enough stamina to sit up for a while, is a rarity.  Because of that, I haven't responded to your beautiful letters.  I would want to write with the same heart and soul as you have.

Okay, cough, cough, I would like to thank the Academy (that would be my amazing family - craaaazy amazing Steubers & Mahonys...they get the Oscar for best supporting family in a drama), Erica, Kathy & Ceal, Rick, Lee & Eddie,  Rockin' Robin, Dina Ellen, Barbie Doll Tool, Jimmy's former "boss" (& sweet friend) ~ Rosemary Springsteen, My guuurrrllll Pearl, Ann Martin, Laurie Frick, uh oh, STOP the music...... talking faster... the two Bobbi's, my FB hidden treasure Marie Kapski, Carole the Cook (really much more than that), Bleznak Carol, Sacred Heart "Cathy", St. Basil's cheerleader Erin & the best friend I never met, Shari......aaaand, they went to commercial.

I know I didn't remember everyone off the top of my head, but I just want you all to know how incredibly touched I have been by your letters and comments.  What??? Who am I wearing???  ...Vanity Fair Sleepwear silly...knock offs can be found at your local Marshalls.

Anyhoo, today Jimmy and I had an appointment to see the nutritionist to discuss the diabetes/gluten free diet.  We decided to eliminate the gluten free component.  I am currently working on a strict anti-viral medication/several supplement regimen with my immunologist at UM.  It takes approximately three months to see if it will help.  At this point, I am half way through.  I want to complete the three month program to see if it does help.  The gluten free diet, could possibly help some symptoms and I don't want to be in a position of feeling like something helped, but not sure if it was the diet or medication/supplements.  After the three months are up, I am going to bring that back in to the picture.

Over the past week or so, I have lost approximately six pounds...not a big deal with all I have to lose.  Regardless, it is a start and I am working hard, taking it a day at a time.   I  am trying to think positive, fingers crossed.   When I am in THE mindset, as Erica will attest, I'm just not hungry ~ simple as that....and you???...she will also attest to the fact that I have ADD, so the mindset is fleeting......

Today started out very rough, but it also started with a great phone call from my Seattle friend, Vicki (Ricki - remember Vicki??)  Another friend, I have never met!  By now, you must think I have my phone book filled with the names of all my imaginary friends :)  Vicki is so, so sweet, I feel like we have met.

Immediately after our call, Jimmy and I left for the Cleveland Clinic appointment and I was not doing good.  It was hard standing at the check-in counter and I was so mentally out of it, really bad.  I should have been in bed.  I was talking so erratic in the car, I told Jimmy that I sounded like Charlie Sheen...  I am surprised he didn't jump out of the car at 65 mph.  Regardless, in the last few hours, I have started to feel better.   I have to say, it feels good writing when I am in a good state of mind, clear headed and feeling decent.

It seems to me that my posts have been on the heavy side and didn't want to miss this more positive opportunity to Yakety Yak....now, where to put my Oscar...Meyer

I've been in Funkytown...

I can't tell you how much I have enjoyed writing this blog.  The reason I began, I think, was to find a purpose, a reason for me to be alive (again - not suicidal...ever).  It is awful feeling like I merely exist. I would love to trick myself in to thinking there is more to my life than that, but there really isn't.

Each day is like the one before and the one to follow.  I am so limited physically. It feels like I have been committed to solitary confinement - with a kitchen...and an appetite...more about that down the road!  There are no words to describe the isolation.  Unfortunately, there is nothing I can do about it.  I am not up to company, and certainly not up to anything that would be demanding on me physically or mentally.  Not to sound morose, but I feel like I am living in a space between life and death - very surreal.  It is because I have been in this "Funkytown" that I have held off on writing the past few days.

It is hard to believe that it has been six years and I still find that I am in absolute shock and denial that this is happening.   In a recent visit with my therapist,  we discussed the seven stages of grief.  In my case, it would pertain to grieving the loss of me.  It alarmed me when I realized that I am still at the starting gate.

It is ironic, because I have been patting myself on the back for taking it in stride, all these years.  I've never asked "why me?", there are millions of people in this world that would gladly switch places with me. I have always been grateful that this didn't hit when my kids were young.  I thought my head was in a healthy place. Now, it is hitting me in the face that I have been in denial all this time.  UGH!!!  You would think I would have worked it out by now. 

Once again, it took me this long to get to my point!   It is horribly disturbing to realize that I can't accept something that is here to stay. It has been a few weeks since I began blogging.  At this point, I am still not sure what it will accomplish, if anything.  For whatever reason, I do feel good about it.  In a way, that is a huge milestone for me....really huge. So, I guess it has accomplished something that is good.

All in all, I do love writing.  Hopefully, it will help me to evolve to a healthy acceptance of my situation....not "the" Situation - I think I can actually say that I prefer my situation over his. :)....dry heave....

I apologize if this gets heavy (again, more on that in a few...), but as I have said before, I think it is important for any very ill people that might be reading this.  The thought of touching someone who is going through the exact same thing as me, would be incredibly rewarding.  In the meantime, I'll risk sharing TMI, in the hopes of connecting with someone that needs a rope to grab on to.  Speaking for myself, I would love to be in touch with someone in my exact, or very similar, position (I just couldn't say "situation" again!) 

Enough about that.....the BIG news is that my social calendar for the month of March is full!  My granddaughter's second birthday party is on 3/13.  (for me, that will do it for the month ).  I just finished watching "The Real Housewives of Miami".  It made me realize that I have to get my act together for my social engagement of the month.  Maybe some orange spray tan, a little collagen in my lips, some "yella" hair extensions, stilettos, etc.  ....I have to stay on that flabulous train.....which brings me to my latest four letter word ~ diet....

On Thursday, Jimmy and I will be meeting with my endocrinologist's nutritionist.  I have a list of questions for her.  My doctor said she will implement the gluten free aspect to the diabetes diet.  So far,  I have been more concerned with eating within the guidelines of the diet, than portion control - that's a problem!  I am gradually working this new way of eating in to my life, now I just have to tackle the portions. If only I could exercise, I wouldn't be in this position.  I DREAM of power walking again, DREAM, DREAM, DREAM!!!!

By the way, my endocrinologist said that my A1C went from 7.5 to 8.5, since 10/09.  Also, my glucose number went up from the mid 100's to the mid 200's.  I can't say that I was surprised. I don't have a severe case of diabetes, but definitely HAVE to hit stop and reverse.

Back in November, my UM neuro ordered a ton of blood work.  In the results, he saw that I have Hashimoto's.  Hashimoto's is yet another autoimmune disease for me.  Once you have one, it is very common for others to jump on board.  Anyway, the Hashimoto's disease gradually kills off the thyroid gland.  When I was tested in November, my thyroid had not been affected.  The blood work I had  a few weeks ago, for my endocrinologist appt, shows my thyroid is now affected.  I am now taking a synthetic thyroid hormone, which I will need for the rest of my life.  It is not a big deal, especially in the scheme of all my other health issues.  There are other options for treating a dying thyroid and I am looking in to them. 

One great thing about blogging, is that I am rarely on Facebook!  FB is fine for a normal, active person.  For me, stuck in "solitary...with a refrigerator...and an appetite", I found myself checking in constantly.  I hated it, but did it anyway out of the unrelenting boredom.  In the last few weeks, I "unfriended" around thirty "kids" from Cinnaminson HS and Holy Cross.  I had no idea who these people were and couldn't care less if they were tired, happy, sad, etc.  I'm trying to get the friend list down to the people that I don't want to lose touch with, again. It feels great getting away from that!!...another positive coming out of the blog experience/experiment!

With nothing but time on my hands, it seems all I do is think, think, think and over-think everythink, I mean everything.  I can relate to "The Thinker"....but you have to picture him with a dress, "yella" extensions, spray tan, etc.  I can tell you what we "thinkers" are thinking - "I was just about to say something, but I lost it...what, what, what was it????"

Think you.... I mean thank you for reading my nonsense...

Sorry for the add on...

...but, I want to thank you, once again, for the beautiful e-mails that keep coming, along with the comments left on the blog.  I am incredibly moved and read them with a huge smile and eyes brimming with tears.

Each day I intend to thank you individually.  Unfortunately, that is too ambitious for me at this point.  I DO know that I have the most amazing family and friends.  You all know who you are and I am sure you feel my gratitude without a return letter, at least for the time being!

Also, I wanted to let everyone and anyone know that my e-mail address is available on my profile page.  If a chronically ill person is reading this and would like more information on my health issues, to compare notes, coping skills, etc., please feel free to write with any questions. My life is an open book.  Maybe we can help each other.

Excuse the "Barbie" pink...

...but, my beautiful, brilliant, pig-tailed granddaughter Gabriella (notice that it rhymes with Cinderella?) is turning two this month.  For the month of March, this blog is for my babydoll :)  So incredible to have a princess amongst our family of boys. 

At this point, it would be yesterday that I went to visit my sweeties.  Danielle, my daughter-in-law, has been enticing me with flip video, after flip video of Brayden, Gabby and Maks....which reminds me I need to Windex off my lip marks all over my monitor screen ~ kiss, kiss, kiss!

I couldn't take the pressure another day.  Today, I felt that I was up to the fifteen minute ride to their house, to spend a short time with them.  I just HAD to see their faces....which, I suppose should be Windexed too!

Knowing that it is very hard on me physically, between the car ride and the sheer excitement of seeing them, I decided to go for it anyway.  My intention was to stay for half an hour and leave before "it hit".

When I walked up to the front door, Gabby was at the dining room window waving at me and her face was glowing - so excited to see me, excited  like her "Mimi"!  Charlie Sheen has NO idea what it feels like to be a rock star.  Seeing how happy she was to see me makes me completely melt and feel like a rock star :)   I think I will buy Gabby a lighter for her second birthday, so she can wave it in the air as she is saying hi and good bye at the dining room window ~ rock on!

My parents were there babysitting.(Thanks for the ham and cabbage mom - diabetes friendly & gluten free - it was really good.)  I went in, took it slow and sat on the sofa.  I wasn't there long before Danielle came in and my parents left.  It is always fun when we get a chance to chit chat and get caught up on all the crazy things we talk about - so much fun!  Unfortunately, it was too much fun.  The party was over too fast and I had to get out of the house and  home in bed ASAP. When I left, I couldn't take the time or the energy to lean over and give kisses and hugs - that hurt my heart...another symptom???

On a side note (surprise, surprise!), I have been having a new symptom over the past several months.  It has only happened approximately six times.  Each time it directly correlates with an earlier activity, by an hour or two.  It is hard to describe.  What happens is that I hit rock bottom.  Nothing new, it happens.   More recently, it is accompanied with an immediate need to be in bed, because I feel like I am going to black out.  It is not like I am going to faint or just go in to bed to take a nap.  I have, what seems like a minute or two to get in bed, then the next thing I know, it is a few hours later. When I am at this low level, my vocal cords are affected where my voice cracks and goes up and down.  That is just a little "...and I mean it!" from my body. Not all of my "rock bottoms" end with this symptom, but hoping this isn't going to become a permanent fixture.

Okay, back on track.  Around two hours after coming home from seeing the kiddies, that is what happened.  I was sitting at the kitchen table with Jimmy, eating dinner and I could feel it coming on. I got to my bedroom, closed the door, collapsed in to bed at 6:30, then before I knew it, I woke up at 9:30.  I need to tell my neurologist and immunologist about this, but I'm not in a rush.  Even though I can sleep through the night, sometimes until very late, I can never take naps during the day.  Once I am awake, no matter how sick, I just cannot do it.  That is one of the reasons this sudden onset of symptoms and need to collapse and immediately sleep is so unusual.

Without question, the visit was worth the price I had to pay.  Nonetheless, it is disturbing.  I am so fortunate to have them living so close to home, but unable to take advantage of this gift is upsetting.  I would give the world to go over, pick up the kids, take them to the park, bring them home with me, make them lunch and play some more.  I want to physically interact with them.  In my head, that is where I should be.  Brayden, Gabby and Maks do not know who I could/should be, since I am disguised as a sick person. As time goes by, I feel like I am becoming more like a piece of furniture and blending in to the scenery, in their eyes.

A few years ago, Jimmy would sometimes pick up Brayden, take him to the park, then back to our house for lunch.  When I would hear them come in, I made my way out to the kitchen and sat at the table with Brayden while he ate his lunch.  All the while, I would be singing his (then) favorite songs, like Yankee Doodle.  I would sing and be overly animated  (yes...me).  He would start laughing then that would encourage me to get more animated and he would laugh even more and...you get the picture.  Before I knew it, I was drenched in sweat and had to take baby steps back to bed.  I remember being so disgusted back then...that I could get that sick just from singing and making faces.   Now I wish I could be animated.  I can't even try a little, I am such a DUD!!!  The kids would love playing with the real me, but not as much as I would.  More than anything I could possibly wish for, it would be to have those special times with them.....not to mention, Danielle really could use a break!!!....I think this is her wish too :)

As sick as I became, I can't help but smile when I think of their beautiful faces today.  I'm happy I did what I shouldn't have done!!

My psychologist recommends spending time with one at a time.  That is like Sophie's choice :(  The thought sickens me.  I have to admit, if just one were here with us, I could quietly play (no animation...WHAT??), and maybe not have to pay so dearly.  Obviously, Jimmy is THE babysitter, I would be back and forth to bed and enjoying the snuggles on the sofa, watching Disney movies...ooooohhhh so cozy!  Still, I would rather them  see "Mimi" climbing monkey bars and going down the sliding board., head first of course!!  I would first have to teach them how to dial 911!

I believe in miracles, not so sure I'm a candidate, but you never know...

This really is a short one!

FYI - I received a lot of letters from friends, saying they couldn't post comments on my blog.  Not sure, but I think I may have fixed the problem.  Hoping to be back soon~

The coast is clear...

I'm happy to be sitting here, reporting that Mr. Hyde has left the building.  Today has been a really good day, relatively speaking.  In one of my previous posts, I believe I said that it was a good one for me to go back and read on my worst days...and I did...and it helped me, emotionally. When I am at my worst, I wouldn't remember if I had a decent day the day before.  It is too overwhelming.

It took a couple of days, but I am back on the blog.  Over the past days, I couldn't imagine coming back.  I honestly thought that I could not do this balancing act of deciding how much to share.   It is so hard walking the thin line between a pity party and keeping my friends and family informed.  I am trying not to get carried away writing about my daily ups and downs.  (ADD hiccup - today, I wanted to write "wine" on our list for the store and when I looked at it, it said "whine", hhhmmmm, a hint Mr. Freud?) sorry for the diversion Chris ;)

For the chronically ill that are following,  specifically the ones I haven't met, I do know how important it is to see all sides...again, the good, the bad and the ugly. (ADD hiccup..when I met with my new UM immunologist, I told her that I can't believe how ugly I am and she said "I know"..OUCH....WHAT, WHAT..!!!  HOWEVER, she continued to say that I have an ugly disease and it shows all over..and it really does, I am unrecognizable)

Over the past several years, I have tuned in to shows highlighting chronically ill people.  I would watch, sitting on the edge of my seat, so anxious to hear their issues/coping skills.  In most, if not all cases, they would sugar coat the story.  The ill person is always in full make up, hair recently styled, showing how loverly their lives can be.  Everyone's situation is different and there are highlights in everyone's life, no matter how small.  Howevaaahh, speaking for myself, I watched the shows to see how sick they really were and how they coped.  They NEVER "go there".

"Oops, I Did It Again".....took me all this time to tell you that I am just going to continue along the same path that I have begun, until I feel the need to do otherwise, which didn't even need to be said!  I am not going to smother you all with the grim details, however, I will let you know when it is unbearable.  I want the chronically ill that are following to know I am legitimate, which I hope will then allow them to relax and enjoy my lighter posts.

Sooo, I am trying to work on my diet.  At the suggestion of a friend, also with autoimmune issues, I am trying to implement a gluten free diet with my diabetes diet.  I spent a week trying to learn about it and working some new appropriate foods in to my daily life.  There were some hits and some misses.  The biggest miss was pasta made with rice flour - UGH!!!!  As it cooked, the water looked exactly like wallpaper paste - not something this gnocchi loving girl wants to see.  At this point, I feel like I have a good enough grasp on this plan and beginning today, I am incorporating it with the diabetes diet.

Today I felt up to cooking.  It worked well, because I broke up the "prep" in to a few different stages.  I was vertical, then horizontal, then vertical, then horizontal, then vertical, then actually sat and ate at the table. I will only tackle easy to prepare dinners, but even at that, I usually have to break it up throughout the afternoon.  After dinner, it was back in bed until now.

I know this isn't an action packed post, but I needed to get back in the saddle again.....and it feels soooo good!

Oh no, I already have "Back in the Saddle" going on a continuous loop in my head ..hope it doesn't happen to you guys!