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Hi it’s me AGAIN. This is all new to me. Six months along. I’ve been praying and asking God to help me not to be afraid. When I get a little short of breath it freaks me out. Can you give me some mental tips to combat it. When my costochondritis is active (which it is): I get that breathless feeling cause it’s all inflamed in ribs and then it subsides when that calms down. Also the altitude here causes it….so I’m using the oxygen they gave me. I wish I could just ignore it and go about my day. I think I have a fear that I won’t be able to breathe. I wish they had psychological counseling at NJH, cause it’s a big part of all of this..to have this happen to your lungs.
When you get breathless at times how do you deal with it? I have way too much fear………and no one to talk to about it. My life is so different now…….I know I have to have acceptance..it’s the breathing thing that is scaring me……any suggestions? I feel like the people on our blog seem to have adjusted to this aspect..they don’t talk about the fear thing /and the breathing much. Why am I so terrified. Thks Bon
Replies to "Hi it’s me AGAIN. This is all new to me. Six months along. I’ve been praying..."
How I wish I could give you a hug! Yes, fear is pervasive and I'm pretty sure very few folks on this site have a complete handle on it. My saving grace for years was a friend clear across the country who also had the disease. We exchanged whines, fears, joys, and prayers constantly. Then she died. It sent me into a tailspin that I didn't think I could recover from. Three years of almost total isolation and the loss of my touchstone was too much. I had to seek professional help. I see a Christian therapist once a week. While she has no personal knowledge of this disease, she is willing to listen, offer resources, and pray with me.
My suggestion for when the breathing scares you is one, the oximeter, and two, distraction. My panacea for most everything is to play with the dog. She loves me unconditionally, is always happy to have my attention, and shines the love of God through her eyes. I hope this helps you, Bon. I know you're walking down a very bumpy road. But all of us are here for you...just keep writing!
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Bon,
First off, I do hope the Denver visit has improved for you. I have just returned from my 4th trip to Denver in less than 2 yrs. The altitude always bothers me, since I live at sea level in CT. A week visit is not enough for me to get used to it. I feel they downplay this out there. Just being there causes me anxiety! I also grapple with shortness of breath, and as you probably know the anxiety over breathlessness can makes you more breathless, a vicious cycle. I have learned breathing exercises at PT, most of which involve breathing through your nose and consciously slowing down your breathing. This requires effort but I think helps. I have not had other prof help although sometimes I think I might need it.
My experience at NJH reflects what others have said. I had surgery last summer out there at their recommendation, Tbe care was excellent and I believe it was the right thing to do. Coping with the aftermath at a distance has been more difficult.
The truth, as others have said, is that they don't really know the answers often with this disease. But they do know more than most other docs. I decided on this trip I have to find a team closer to home. It's good that you have someone local to see who is knowledgeable. Good luck with everything.
Chris