Update

Guess why horrific amounts of asthma meds might not work... Go on. Why might medications specifically targeted to a disfunction of the lungs not give someone relief? Because the patient doesnt have asthma.
I do not have acute, uncontrollable asthma. I may have mild to moderate asthma but right now, we are guessing if I do have asthma it's pretty mild. I will do a methycholine challenge tomorrow to find out. But all this pain and breathlessness is not today nor has it been in the last year, asthma.
We have identified 3 factors so far that have caused my problems. I have Swiyers James syndrome which basically means that the branches in my lungs that are supposed to be smooth and tapered actually look like cheetoes. This causes the congestion and makes me prone to those endless chest colds. I also have vocal chord dysfunction and some damage and problems with my esphagus. Apparently, you vocal chords second function is to produce voice. Their first function is to shut and protect the from things getting into my lungs. Mine are very very good at this. In fact those little traitors shut all the time for no reason at all. But sometimes they have a reason. Because my esophagus is damaged, it is letting reflux go back up. This further provokes my vocal chords and they slam shut cutting of my air.
The almost-funny-if-it-werent-so-horrible thing is that the asthma meds that I inhaled (and kept saying didn't help me) were actually agravating my vocal chords. Oh and, the reason that epi was the only thing that worked was because it made the chords release. Hey, you know what else besides painful shots of heart damaging medication works to stop a vocal chord spasm- taking in a puff of air and blowing out hard through pursed lips. It creates pressure that forces the chords to open. I learned it in about 7 minutes. It works like a charm. I walked home from the hospital yesterday afternoon. I walked back today. Unbelievable. So all those times I said I felt like I was choking, I was right. I was.
I don't have all the tests back and still have many to do. SO more stuff could turn up. There is a discussion about surgery for the espohagus but we have decided not to scope my lungs. We know I have Swiyer James and I just need to find a doctor in Idaho that can treat it. I also have a mass in one lung. That could be normal and fine. It will have to be CT'd on a regular basis to see if it is growing. If it grows, then we shall all freak out cheerfully for hours. But we'll wait on that. I also found out that I have severe osteoperosis. That kind of sucks and that will take some managing.
Today, I have some fairly un-fun tests. They are putting a tube in my esophagus with a little ball on it. They leave it in for 20 hours to asses the condition of my esophagus. Plus I have a sputum induction (these people LOVE their sputum) again and a barium swallow. I am looking forward to my sleep test.
I had to laugh this morning as I reset the motion alarms I put on the door and window of my hotel room. I am so weird. Who does that? I have (mostly) mastered the bus system with the exception of a little 2 hour detour to and around hell the first night I tried to get home. But apparently peole who can breathe can walk so I have been doing that. My Doctor isn't happy about that because she feels like we need a better plan for avoiding fractures before I take up exercise. I feel like I have held still too long. I will have a scan for Osteonecrosis which means the cell wall between the cartilage and the bone has died and they slip apart. If that is ok, I am going to ask for physical therapy.
And I got out of all the psych appointments. Every single physician that I have seen (8 thus far) crossed it off my schedule. The way it works is, you go to your appointments and then each doctor sends down orders for what other tests you should do or classes to attend. They took off all my psycho-social classes too. I am glad but I was rather looking forward to "Sex and Chronic Illness". I'm sure that class is a laugh riot. When I did the questionaire for psych at the beginning of the week, I scored very high in terms of my sense of being supported . I also scored really well (this shocked me) on optimism (seriously) and having a balanced life. So to the extent that I am not insane, thanks - your support helps. To the extent that I have cleverly concealed my lunacy, thanks for keeping my secrets.Amy- I was supposed to call Annet but I missed her. Would you email this to her and Bonnie? And you might have to call Annet and tell her you emailed her something. :)
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