Wednesday, April 16, 2014

FACING FEAR!

As I come to terms with the fact that my lung disease will not get better, I must learn to face fear. How does one do that? How do you stand your ground, knowing how you are losing the battle, and not be scared? 

Denying the reality doesn't do any good. I like to know things. I like to plan. I'm a planner. I want answers. I want a deadline. I'm not getting one. For me, not knowing makes the fear worse. So how do I deal with that? 

I think, in part, it's about focusing on what I love. Spending time with family and friends I love. Finding a way to DO anything at all that I love; that gives me happiness and joy. Sitting outside on the deck with my Mom one day last week was glorious! The sun shining, watching the birds and seeing the very tiny signs of Spring trying to sprout forth. I loved it. Today I sat in my office and just spent some time looking out the window enjoying the beauty of nature right outside my own home. It made me smile. 

This is a work in progress. I doubt I'll master it, but I will work on it. This quote resonated with me and my niece will love it too. But I feel it is also true. I wish I had never gotten sick, but there is nothing to be done about that. So in the meantime, what do I do with the time given to me? Make the most of it. That, I guess, is how I will find a way of facing my fears.

(Frodo)  I wish all this had never happened.  
(Gandalf)  So do all who live to see such times but that is not for us to decide.  All that we must decide is what to do with the time that is given. - The Lord of the Rings, J.R.R. Tolkien 

Music from The Lord of the Rings





Sunday, April 13, 2014

LOVE & GRATITUDE!

Normally on Sunday I post an Inspirational Quote and Song for the day. It was not a good day for me today and I was not up to posting.

However, these past few days have shown me I have MUCH for which to be grateful. I have been showered by love from my family (bringing me meals and visiting), friends (messaging and calling and praying); my IC Community of friends (holding an online candlelight vigil for me) as I fight this lung disease.


So in lieu of the usual, I here is a song I love that is dedicated to each and every person who is reaching out to support, encourage, love and help me battle this illness. This is for each and every single one of you!


Thursday, April 10, 2014

THE FACE OF BRONCHIOLITIS OBLITERANS!

This is my video journal of what it's been like for me since being diagnosed with Idiopathic Bronchiolitis Obliterans. 

The first photo is over a year old, but every other photo in the first half of the video was taken within less than weeks of becoming sick with the rest showing the rapid decline since then of my health and how the side effects of all the medications have taken their toll on my body.

I realize many people must take these medications for many reasons and I am not alone in having to deal with these issues. But, as has always been the case with my Blog, this is about my personal journey through my illness and raising awareness. Since realizing how little is known about Bronchiolitis Obliterans, again I am determined to put a "Face" on it and try to raise awareness.

So, this is "The Face of Bronchiolitis Obliterans" - MY journey since being diagnosed.


Wednesday, April 9, 2014

THE BIG UNKNOWN!

I've said this before, but I'll say it again. I started this Blog when I was diagnosed with Interstitial Cystitis because I wanted to find a purpose in learning to live with a chronic, incurable and painful disease that is not well understood.

Those of us in the IC community often comment on how we feel so little is known about IC and how much more research we need. I could not agree more. Part of my decision to become involved in volunteering as an ICA Patient Advocate was to help raise awareness, help others become better educated patients and do whatever I could to help others suffering with IC.

Now I find myself in this new health crisis. If I thought I had a disease about which little was known before with IC, let me tell you Idiopathic Bronchiolitis Obliterans is even less understood. There is little to zero information about it to be found to explain it; well at least explain why I have it. There are reasons people can get it. It can be from exposure to certain chemicals and toxic fumes; lung transplant patients get it as part of the rejection process (ironic considering my only option is a transplant); HIV patients can get it; and it can be caused by reactions to certain medications, although the information available on this cause is EXTREMELY limited. And, lastly, we are left with Idiopathic - medical speak for "we just don't know". The only two that have any POSSIBLE bearing on my case are drug induced, which we cannot prove one way or the other or Idiopathic. So my clinical diagnosis is Idiopathic Bronchiolitis Obliterans.

We have no idea how I got this and my attempts at trying to understand it are met at every turn with frustration and lack of information. There are no answers. When I was diagnosed with IC, I did what many of us do and began researching IC and reading all I could find. And realize now how much information there really is out there about IC. And 12 years later, as I have worked to advocate for IC patients, there is so much more information than ever before. Do we need more info? Of course. But when I compare what is available to those suffering with IC to what I'd like to know about my lung disease, I am stunned by the lack of information and understanding.

Doctors need to research the potential link between medications causing this. The doctors have all said there is a chance that's what caused me to get this, but so little research has been done they will never really know. We need to know. If medications presumed safe are responsible, we need to know about it.

Even my own doctor has told me he has spoken to many doctors about my case, asking if they've ever seen anything like this. He has found no information. All the doctors I have consulted admit they are shocked by the speed at which this has progressed. They cannot believe in 3-4 months I went from not having it, to needing a lung transplant to save my life. That's fast!


Friday is the day I expect to hear from the second Transplant Team about whether they will accept me as a transplant candidate. I have already been turned down once. So I wait to see what this team will say. 

In the meantime, I take a ton of medication trying to stabilize me. The side effects are nasty but there is nothing to be done about that. My life or side effects. I'll take my life. 

But I am living in the Big Unknown on so many levels. I think everyone can relate to that. We want answers and when we can't get them it's frustrating. I will never know why this happened; I will never know why I got IC either. 

The Big Unknown; it's not a fun place to live.








Sunday, April 6, 2014

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

A dear friend sent this to me to inspire me and it just hit the right note so I wanted to share with all of you!


"Courage Is" - The Strange Familiar


Saturday, April 5, 2014

AN ANGEL TO WATCH OVER ME!

Yesterday I was surprised to receive a package in the mail from a friend and former co-worker. I was not expecting anything so could not figure out what it might be. As I opened the box I discovered the loveliest little gift sent to me to help me as I fight this lung disease.

An Angel to Watch Over Me! These figurines are called "Angels of Healing" and are by
Artist Susan Lordi for Willow Tree. The message from the artist, Susan Lordi, that comes with the sculpture says the following:


"Willow Tree is an intimate line of figurative sculptures that speak in quiet ways to heal, comfort, protect and inspire. This piece is cast from my original carving and then painted by hand. I try to keep the interpretation of Willow Tree open. I hope this makes it more personal and allows you to decide its meaning. May the simplicity of these figures communicate peace and serenity to you and those you love."

The artist hand carves each figure from her studio in Kansas City, Missouri. Expression is revealed through gestures only ... a tilt of the head, placement of the hands, a turn of the body. The simplicity of form and the absence of facial features signify Willow Tree. It is Susan's hope that these pieces be meaningful to both giver and receiver.



I cannot say how touched I was to received this gift from out of the blue. And the intent behind it truly is meaningful to me. That the interpretation is left to me to see what I see in it; to take what I feel from it. I really like that. 

So I have an Angel to Watch Over Me; to inspire me and protect me! The kindness of this gift truly touches my heart and I am so grateful to have so many people who are reaching out to help me as I go through this battle.


Friday, April 4, 2014

DON'T HOLD BACK!

I was emailing a dear friend who has been a source of support and strength as I face this life threatening lung disease. She wrote me something that really struck home and I wanted to share it; I hope she won’t mind.

This is what she said to me:

“Hoping you are finding ways to embrace the beauty in your life in the midst of your tiredness and pain – and surrounding yourself with those who love you..... Remember, your tears are an expression of your love for life, and your ability to experience intensely – so no holding them back to protect others!”

I found her words so comforting and they really touched me. This is how I feel and what I am experiencing as I go through this new journey I am on. 

People find it hard to watch someone they love cry, but for me it is an  expression of my love of life and my family. I am letting everyone I care about know that they mean something to me. I’m not wasting time holding grudges. If it’s one thing this has truly hit home is that life IS too short. You never know how long you have. Make the most of it. Tell everyone you love that you love them and do it often. It feels so good!