Breathing Air

Hello and Good Day,
Actually I have had 2 really good days.  Energetic, feel fairly well, etc.  Which of course makes me question " Do I really have Pulmonary Fibrosis?"  but of course I know I do, I just have to walk across the room with all this oxygen to know I do.

Breathing - here's the thing. Breathing is one by rote, but I am aware of my breathing at least 20 times a day if not more.  I will just be sitting quite and notice that my breathing is calm or labored or my mouth is open (meaning I need more air). This is not to mention when I actually walk somewhere or move around.  People without PF are not aware of this.  When I am just sitting quite, I do not know why the pattern changes, I just know it does.  When I am doing something I am less aware (or I just ignore, I'm not sure which) like baking or cooking.  I won't notice until I am almost gasping for air.  This doesn't take long, but I am not sure how long.  Then I have to stop and rest.  I had to sit down to stir the jello for Easter.  My dear husband Ray pointed this out to me.

Reverend Beth came to visit today and it was wonderful.  She is yet another God send from Hospice.  I am suppose to be dead by next Wednesday per the prognosis of January and we all no that's not going to happen, at least not from PF.   Did you know that the Word Breath in Hebrew is Spirit.  Wow!

I have been thinking more about how long I have had PF before diagnosis and I think it is 5 years.  Rhonda, I remember you asking me at the TC the 1st summer at Quincy Park "Aunt April why are you breathing so hard?"  I don't remember you asking me that ever at Sunset Cove.  What do you remember?  Given this info, I have had this disease 6 years and 3 months.  With my only escalations being when we screwed around with the Prednzone. Those escalations where both huge.  Just saying.

My back is still giving me lots of grief and I am trying to pay attention to when it hurts and I am really starting to believe it is due to lack of oxygen.  More to come on that another time.

Everything I read about IPF talks of a terrible cough.  I do not have a cough (thankfully)?   Anyone else out there with IPF without a cough?

Love and Prayers, That's all folks.   http://www.facebook.com/#!/PulmonaryFibrosisFoundation

Oh what a difference a Year makes

Easter 2011 is in the history book.  One year ago we shaved the balance of my hair off from.  Most had fallen out due to the last Chemo treatment which was a full on blast of chemo.  I was devastated to say the least.  At the time we felt the Pulmonary Fibrosis was the least of our concerns.  Well my hair has grown back in and has been cut three times since then. I have to keep it quite short now due to the PF.  Using my arms to dry and style it takes too much air.

I am happy to report that to the best of our knowledge I am still cancer free, but as you know if you have been following this the PF has marched forward with a vengeance.   Other than being tired all the time not much has change disease wise since the January prognosis of 3 to 4 months.  However my life as I have known it has changed drastically.  My shrinking world is taking a lot of getting used to.

I can no longer go to a store by myself (except a grocery or a store with an Amiga) as I can't walk around and shop anymore.  

Trying to go visit anyone more than a 15 minutes away becomes a task on how to take along enough oxygen.  So mostly I just stay home.

My family would like me to quit driving altogether but I am not giving that up yet.

I am making plans to walk every nice day.  Will this spring ever get nice.

The nurse comes to see me 2xs a week.  I visit with a social worker once a month or so and the same with Beth the Hospice Minister.  I also have lots of friends that visit.

Facebook has become very important to me to help pass the time.  I plan to do small project too.  I want to read more too, but I have to turn that blasted TV off first and I find myself just laying on the couch and watching.  Can't tell you what I am watching, but I'm Watching.

On a high note, I am planning on walking the Survivor lap at the Dexter Relay for Life on March 14th.  Thought I might try to raise a little money for all cancers while I am at it. Check out my page if you are so inclined.  http://main.acsevents.org/site/TR/RelayForLife/RFLFY11GL?px=20818750&pg=personal&fr_id=30160

I have lots more to say, but it's been a fun but long day so I am closing and going back to the couch.
Happy Easter Everyone.