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 :)