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 :)