I saw my pulmunologist Tuesday and while I am still not fully myself as it was so scary it was a crucial appointment. He said he is gonna try to set up a chemical challenge for me when I come to see the new neuro next Tues.

He did asked about my swallow and had me swallow water from aglass. He said do you always swallow so little? then he asked me to swallow the whole glass after he apologized as he kept doing as he could tell how much worse I am and he was putting me thru paces. I tried to do this and it turned into this big wicked show that I cant even begin to explain. But him and my duaghter seeing this was important. I have learned to accomodate so much over the last few years so I can eat and drink and so I dont always think to bring this up. I have my swallow worsen since I got worse the week my mom went into the hosp and I was on so many phone calls with my sis and the medical folks. He also had me try to lay flat and breath. That was excruciating and embarassing tho I guess at this point nothing should embarass me. He asked me to relax but how do you do that when you are fighting as if someone has a pillow over your face?? This brings tears up. But that day I had to focus on gettting thru.

When I tried to do the intake I was only able to talk in short halting pieces and turn it over to my daughter alot. He asked if I cough and I said no but my daughter said yes and described how I go into these coughing fits.

We went over that I am now taking more mestinon and the only barrier to more is the diareah and the higher hydrocodone I am helps that but I dont want to use it that way permamnently. I told him taking it more often in the smaller doses works better for me.

It was all very good tho horrific for me personally to go thru. But to go thru it with him was a blessiing cause he really dose care and will make sure I get diagnosed and that the new neuro works aggressively towards this. This made the neuros job easlier next week.

Last summer I went to the ER twice and it was not useful in fact one hosp the doc mocked me and said to give up. In the past 2 years I have learned so much and will go if needed but I do know how much good I can do at home if I just do absolutley nothing and rest. And use things like cold packs on my chest and back of my lungs. I dont live in the same city as the univeristy I am treated at. If I get worse my breathing guy said he will be there in a heart beat. That is 45mn away. I just cant talk as part of the deal of total rest so the notice saying my medicaid was canceled which was a crazy mistake but needed a call was bad timing. And my home aid comes tomorrow and I have to commit to not talk to her and write messages only. I hate that. She is very new so I cant just let her do her thing as he is still learning.

Ok this is the good and the bad of what happened Tues and bit since. Last nite breathing was tolerable, but had extra trouble and had to eat and take more mestinon during the nite which I havent been doing. That sensation that happens when its like there are walls locking down the flow of your lungs........ there is a certain point at which I just need a break from that. A break, an easing.

Annie59