Trust 11/11/2011
 
How important to you is TRUST in a relationship? Is it not the foundation for all things that stem from it? I believe that without it a relationship, friendship or partnership (business or otherwise) can go nowhere. Without  trust, you leave yourself open to hurt, betrayal, vulnerability or a number of undesirable circumstances . Recently, a friend was (in my opinion) betrayed within the confines of a long-term friendship. My friend did absolutely nothing to perpetuate this action against her, but was left scratching her head and wondering why so much anger was focused in her direction. It was hard for me to observe this, as it happened to someone I care deeply about. I need to know that I can trust the people I call my friends. Trust that they will not go crazy on me for an absurd reason, or no reason at all. Hard to see someone you care about be walked on, but worse when it happens to you. I've been there as well....Are YOU trustworthy? Whom do you place your Trust in? My trust is on Our Lord, Jesus Christ, who never forgets me, nor will ever foresake me.
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Happy 50th Sissy!! SO glad that Mom and I made the trip out to Pennsylvania to celebrate with you and family and friends! You are a blessing in my life :)
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Summer's End 09/28/2011
 
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Always have a hard time letting go of something so beautiful. It was a fabulous Summer; Ron came home. Visited with Charlotte n family. Saw the Goo-Goo Dolls at Summerfest. Had my breathing restored. Resumed my workouts. Made some wonderful new friends. Starting to live again...Autumn, here I come :)
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Dolores Hope passed away yesterday, September 19 at the tender age of 102.
http://www.nytimes.com/2011/09/20/arts/music/dolores-hope-bob-hopes-widow-dies-at-102.html
I have always respected her. Rest in Peace
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Centre of equal daughters, equal sons,
All, all alike endear'd, grown, ungrown, young or old,
Strong, ample, fair, enduring, capable, rich,
Perennial with the Earth, with Freedom, Law and Love,
A grand, sane, towering, seated Mother,
Chair'd in the adamant of Time.
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I've not shared this with many people, mostly from the standpoint that few would believe what I'm about to tell you. I simply ask that you have an open mind to my experience as I tell it.
The morning of Sunday, September 9, 2001, exactly 10 years ago today, I woke up feeling well. I thought that I would have some breakfast and then head over to church as the new fall schedule was beginning. Within minutes I began to feel melancholy and had no answer as to why. I watched some TV as I ate my breakfast, but as those moments passed, I felt emotional. Tears began to well up in my eyes, which happens to us all on occasion, and so I wiped them away in an almost dismissive fashion. I sat there for a few minutes, then a few more, until it became clear to me that I was in no mood to get ready for church.  I laid on my sofa for most of that morning, just staring at my television. I cannot tell you what I was watching, but the tears were constant at this point.  I had an overwhelming sense of sadness with no event or reason to attach to it. All was going very well in my life at that point; Great job, single and dating, wonderful friends and family relationships all intact.

The only way that I could describe it to myself was that I had an exceptionally strong sense of impending doom!  I simply could not shake it. It felt to me like tragedy of epic proportions had already struck and I was grieving in the aftermath. But nothing had happened. All was well. I was healthy and happy and hopeful of my future. However, on this day, 10 years ago, I felt afraid, in shock , hopeless, emotional, and unbearably depressed…..with absolutely no reason to feel this way.  I cried all day, until I could cry no more.  I didn’t speak to a single soul that day and got up the following morning and went to work.  A co-worker asked me why my eyes were so puffy.  I told her this story. She reassured me that all was well.

I do believe that God was sending me a message of sorts. Or perhaps I was picking up on what was about to happen in a very strange and unusual method.  I may never know what that experience was, but on Tuesday, September 11, 2001, I once again felt all that I had just 2 days prior.


The Song that resinates with so many in the days and weeks following  the attacks was Five for Fighting's Superman.......
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Good Things 09/03/2011
 
Earlier this week, I was contacted by the surgeon at Cleveland Clinic who performed my latest surgery, airway dilation. Dr. Benninger is a chairman/instructor with the Head and Neck Institute at CC and thinks that my 'story' could potentially help other patients and doctors. I assume that this is true. I believe that if there is not a qualified physician or specialist in your area, it behooves you to seek them out in other areas. It's your health we are taling about, right? So, this week I was interviewed by a very nice young man who is the Communications and Public Affairs Manager for the Head & Neck Institute of Cleveland Clinic. He gathered my information for the purposes of composing a press release of sorts for patients, doctors and the media. The hope is that my 'story' will generate interest in the Cleveland Clinic and encourage people to consider them for specialized medical care. The CC will then serve as a liason between myself and the media (and hopefully patients and medical personnel as well), not only in the Cleveland area, but in my state of Illinois and nationwide. Fingers crossed!

My journey with Wegener's and Relapsing Polychondritis is not a selfish one, meaning that it's not an experience intended solely for me. I am meant to help others in their journey. Now, more than ever, I am thrilled that the local ENTs that I consulted with failed me because it was a kick in the pants I needed to take matters into my own hands and, once again, self-advocate. I am excited to see what comes of this...perhaps newspaper/magazine articles or even some on-camera interviews. I am a voice for my people and am always willing to do my part to raise awareness, but also guide patients to those who can help them with their on-going issues. We shall see where this leads......more to come :)
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Jeff's Birthday Poem

With you I've found a wonderful friend
Who's mind I cannot comprehend
Your wit and charm are above the rest
But 'tis your heart that I like best

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Happy Birthday......and many more!
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What's next? 08/18/2011
 
First a shout out to my cousin, Jim Laystrom, who is celebrating his 48th today! Happy Birthday Cousin!
I have been thinking about what my next adventure will be and should I pursue it irrespective of chemo. Right now, that is to say today, my labs look great! Current meds are keeping my inflamatory markers within normal limits and there is no need for chemo. Tomorrow may be an entirely different song and dance, but much like my dear friend Scarlett O'Hara....I'll think about that tomorrow. I am still composing my book and may give more focus to that project heading into the fall. Italian lessons, sure. But I feel this incredible urge to dance again.....it would have tremendous benefits for my physical well being, but I was really good at it as a younger lady and just might try it again.
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Two days ago, I had a procedure called Airway Dilation. Prior to this surgery, I was breathing at only 40% capacity. Many can function just fine with this imparement.....who are these people?? I could not, and over the last 2.5 years, my airway has slowly and steadily narrowed. I could not walk up the 17 step flight of stairs in my house without becoming winded. I could bearly speak a full sentence without stopping to take a breath. Singing has been a real challenge, and for those of you who sing....my phrasing was off because I could not sustain enough air in my lungs or airway.Forget my diaphragmatic breathing that I was trained to do...pointless! I am still recuperating, so it's tough to tell just yet.....but I can breathe and it feels so amazing. I am certain that many of you take this simple involuntary/voluntary (the only human function, BTW, that is both) action for granted. I am in the minority, because my breathing has been off since 1983. I do NOT take it for granted.....do you cherish every breath you take?
I would like to thank my surgical/anesthesia team at the Cleveland Clinc. Phenominal, wonderful group of Dr.'s who were so caring and compassionate towards me and Ron. My confidence in them put me at ease and provided me a fantastic result. Dr. Doyle (Anesthesia) came to me in recovery and told me that I was welcome back to Cleveland Clinic ANYTIME because of my " easily accessible airway" and because I am good shape. Now THAT is a compliment! Should my airway require future dilation....I will most certainly consider Cleveland Clinic Head and Neck Institute and Dr. Michael Benninger. Thank you for your outstanding care!
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