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Thank you so much for this reply shooei. I was going to cancel the appointment for my endoscopy today but that little boost of encouragement has given me some needed courage. I am also going to Idaho Gastroenterology and have heard many good things about them. I also have an appointment with an ENT and am hoping it can shed some light on my throat issues. I keep thinking this is all in my head but the reading on my CPAP machine the morning after the last episode tells me that something is definitely closing off in my throat. I think that is the hardest thing about this diagnosis. It is not just one thing we are dealing with. It is the cause and also the effects it is having on our other organs/systems and trying to keep up with it all and decide what should be dealt with first.

The last time I was in the ER they gave me hydroxyzine which helped the swelling in my throat but I think the intent was to calm some of this crazy! My husband and son can relate to your husband. I keep seeing sideways glances wondering when I am going to think I am dying again and getting ready for a mad ER dash.

Have you had a bronchoscope? I think this is what is frustrating me right now. I have had such bad reactions to the medications that they are using to treat symptoms but the talk of finding out and treating whatever is in my lungs has been minimal. I think my sudden down turn coinciding with the time I began taking the first medication has left me a bit untrusting. I am usually a people pleaser and would have thought myself to be a good patient but I am really struggling with trusting in anyone right now.

I am so thankful for you and everyone on this forum. It is encouraging to know I am not alone and read about everyone else's struggles and successes in dealing with this disease. It is especially nice to hear from you, as I know you are living in my area.

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Replies to "Thank you so much for this reply shooei. I was going to cancel the appointment for..."

I hope the endoscopy went well! I have not had a bronchoscope. Well, now that I say that, when I coughed up blood clots they snaked a thing down my nose so I guess I have. Haha – it's crazy, with all this crud you actually start forgetting! I was pretty nervous about that as I thought the numbing might make it feel like I couldn't breathe, but it was really easy.
Let me know how the ENT goes. I need to see one, but just haven't had the energy to find a good one.
I REALLY get the trust thing! When nothing is helpful, and my GP just started throwing drugs at me (I don't do well with meds and avoid them if at all possible), I started feeling like I had to figure it out on my own and that is exhausting and discouraging.