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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
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
I remember that you could even walk at Sunset. Your legs would hurt and you didn't do it all the time but you did walk to the store and then to my trailer etc. It wasn't your breathing that was the problem in my memory but the severe leg pain... I don't ever remember your breathing being like it was at the TC when we were at Sunset.... not to say you never got tired, as I remember you feeling tired and rubbing your legs & feet because they were always sooo cold. But, YES I REMEMBER THAT conversation at the TC now too! I long have forgot about that conversation when all of this was diagnosed but I remember clearly now worrying about your labored breathing and finally saying something to you… I remember you were having a lot of trouble breathing and walking by the time you first moved to the loop because I said that you probably wouldn't come down as often, ...that you wouldn't be able to make the walk without resting…. so the breathing issue, I agree, began soon after we moved to Quincy Park. If my memory serves me correctly though it wasn't until you moved to the loop that yr breathing became so labored that "every day" movement became a struggle for you. I love you so much AA and am so proud of you and your ability to share with the world …. your dance of life…Praying that you dance every day you are able…and know God dances with you on the days you can't. Love & Laughter Oways.
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