THEY JUST DO NOT GET IT......

[Guest guest]

To whomever likes to hear me preach.

Last night a couple whom we have known forever and are among our closest group of friends stopped by to bring leftovers of a big pot luck thingy that people from our church had....which of course I was not able to attend. This was a kind, sweet act of kindness and believe me we will enjoy the food today.

During the course of conversation, I was telling them that I was in end stage Pulmonary Fibrosis and Stage IV Severe Pulmonary Hypertension. That I was experiencing fear and grief. I just wanted them to get it, to share it and to lift my pain a little. I know that they love me, they have showed it a hundred ways over the years. They are compassionate people.

After spilling my heart out (and I realize that there is not a manual of what to say to dying people), she said that I shouldn't feel any different than anyone else because after all, we are all going to die. I told her that was true, but they did not have a death sentence. This is like being on death row and I keep getting my date of execution extended (for which I am so grateful). But, the emotional roller coaster and the fear is so overwhelming.

She said that they were in the same situation of dread because her husband had survived Prostrate Cancer 11 years ago. Not the same thing. Not even close. He has been cancer free for years and years. How can you compare.

It went on and when they left, I was so frustrated. How hard is it to just say, "I can not understand how you must feel, but I love you and am praying for you". Don't immediatly minimize my suffering and think that will make me feel better!

To you people on this group, I want you to know that this is where we come to empty our hearts. It is such a blessing to express grief, dread and fear....and not worry that someone thinks I am weak or a big old hypochondriac. Sometimes just writing the words down on paper is such a relief. Especially knowing that I am among friends who will not judge me by what I say on bad days or good days.

Thank you all for just being here!

Hugs, Joyce D.

Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006

I will not forget you...Behold, I have engraved you on the palms of my hands. Isaiah 49:15-16