Woe no, here she comes...

Yes, yes, yes....same me and same story.  After writing the last several posts, I felt like I have been getting too heavy..especially for those that are not sick.  I really do need to set up the private, invitation only, blog for those that are in my position.  I have so much to talk about...need to talk about, but I do not want to to inflict this type of conversation on my family and friends.  


I hear from readers of the blog through e-mail for the most part.  Once in a blue moon, I'll get messages at the bottom of a post.  The last post I had written, concerned me with its heaviness.  In the end, I decided to let it be, because it is me being honest.  


In a lot of posts, I feel like I repeat myself.  It is difficult not to, since the health issues do not let up and my emotions are always close to the surface.  When I do write, whatever is in my heart, pours out through my fingers on to the keyboard.  I'm telling it like it is.  Also, if I were reading the blog of someone in my position, I would want to be saying to myself "me too...me too!!...they completely understand". Whitewashing isn't for me.


After my last post, I received the most comforting, and VALIDATING comments from Ann, Lynne and Vicki.  I've said before that my blog is as much about wanting to be a touchstone for so many in my shoes, hoping  to help in some way, or even putting a smile on someones face,...but I have also said that it goes both ways.  Ann, Lynne and Vicki's comments confirmed to me that I did to the right thing, as far as posting the downer days too. Thank you so much! This is very much a two way street. I really needed to hear that they "got it".


Vicki is also very sick and we have been in touch a lot lately.  We seem to be riding the same roller coaster...in the same seat.  These days, it is like we can finish each other's sentences, when we talk about how impossible this is emotionally.  Again, not to sound too dramatic, but this is really what seriously, chronic illness is.  Vicki was telling me about her horrible Christmas last year.  Poor Vicki was very sick, hospitalized and feared she was dying.  She said that one night, she looked out the window at the night sky.  To Vicki, the black sky represented what her life has become.  The stars signified the special moments that are an unexpected, a heart warming spark.  Since Vicki was too sick to decorate her place for the holidays, she said her husband went out and bought prelit garland to decorate the inside of her home.  For Vicki, that was another shining star, against her black sky. At that moment, as simple as that was, it was just what Vicki needed....and, I get it. Vicki and I both struggle to get through the holidays.  It is only July, and I am already dreading them coming. 


Vicki texted me again today, continuing from the last few days.  It is so comforting to have friends that understand this experience.  I texted to her, that when patients are on chemo and get to the point that they cannot take any more, they choose to stop the treatment.  We don't have that option.  In fact our symptoms are much like the side effects of chemo.  Neither of us would ever commit suicide, so I'm not trying to send up red flags. That will never happen. Everyone knows I am always using analogies  to get my point across.  I believe the patient/chemo story is a perfect analogy.  We have no options. I can never imagine getting worse, but somehow it does.


It is strange, I have never been a jealous person.  People would ask me, all the years I had the design shop, how I could stand going in to incredibly beautiful homes....not talking about the McMansions. My response was always the same, that I am not jealous at all, just grateful for what we did have.  Not to mention, the millions of people in this world that would have given anything to have my "former" life.  


Since the last two months have been so hard, with unrelenting symptoms and dealing with the emotions, I notice that I have become quite the "jelly Bean". When I say jealous, I mean watching neighbors going out for power walks. Really, watching anyone and everyone with their lives in tact. 


It has been a very tearful couple of weeks.  As you know, this has happened before and will happen again.  Right now, I am trying to wait it out.


My objective in writing this blog has been to hopefully be of some help to others in my shoes.  All I can do is be honest.  My intention was never for this to be a place for me to vent or unload.  Hoping that somehow comes through in my words.


 This is an excerpt of what Vicki wrote in my comments section:  I've told Dale before that our new condo feels like a beautiful prison. I spend so much time inside and away from people, and like you, miss out on so many memories with the people I love.  

This one is from Lynne ~
Hiya Cathy,
Boy, you couldn't have said it better. For me, it's almost as if I was, not I am. Been trying forever to get past it, but when you can't do anything for more than a couple of minutes, where else does the disheartened mind go? Maybe I will learn to meditate and have out of body flying around experiences...
love and prayers,
L
This one is from Ann ~ we met in Kindergarten...and yes, our memories from LBI will be with me forever..a whole lot of laughing!!
athy,
You are making a difference in peoples lives, still. You are educating some and you are the voice of others. You are showing us the commonality. At some point we will all be where you are and you are teaching us how to handle the dark moments. Your glass has always been half full. You always look at possibilities not obstacles. Life has not trained you for this state of limbo but you are handling it with style and grace. Thank you for all you do. 
I too cherish the memories of LBI with you and your dear sweet mom. They were some of the best times of my life. 
Ann

Again, these comments made me feel so much better about this blog.  My primary goal is not to sing the blues or look for sympathy.  My goal is to reach others that are as sick as me, and sicker.  We are in a special club, one that you have to be in to truly understand.  Unfortunately, I really have been concerned that the posts have been too heavy, and I ask myself "who am I helping, by writing this".  I know my eyes would be glued to a book, magazine,etc. if there were an article written by someone like me, so for now, I am staying with it.

It has been approximately two weeks since my last post.  With my state of mind being so poor, I would not have come on.  I guess I just wanted to write tonight to show the kind support from Vicki, Lynne and Ann.  Their messages really lifted me up and is a great help to getting me back on track.  Thanks guys...XOXO 

Ugh...I have reread this more times that I should have. Each time, I find a new grammatical or spelling errors.  Not proof reading again...time to get on my back again. Please excuse my mistakes!