Boston...

I went to Boston this weekend to see my man.  It was great seeing him.  Being nauseous and miserable, that was NOT fun!  Not a clue why I was like that.  I felt fine on the ride up and when I got in at 1:30am.  Woke up to take him to his class and again felt fine.  By 9:30am I was nauseous and looking for a place to go so I could sleep (we had checked out of the room already).  I was assuming it was because I slept horribly since I didn’t have my O2 with me.  I slept for about 2 hours and then went and picked him up.  My stomach felt a little better but I was still afraid to move my head too fast.  We drove into Boston and checked into the hotel room.  BEAUTIFUL room!!!  I took some pictures hehe! 

Well we met his co-worker for lunch and then I came back up to the room to lay down.  I was hoping to get some more sleep.  Didn’t happen.  I laid there for the whole afternoon, nauseous, with no sleep.  We ended up just staying in bed all night, which was fine by me.  But I felt horrible since I was so sick to my stomach.  It did feel better by the end of the night which I was happy about.  I was able to sleep well.  This morning I felt great too, I slept well, no nausea, happy.  We packed, showered, nebbed and then left to go downstairs to eat breakfast.  I swear the minute he shut that door my stomach almost came through my mouth.  It hit me like a freaking brick wall.  Took all my effort to not barf right there.  We went down to breakfast and I stared at my potatoes.  At least I was smart enough to not order a big breakfast.  I drank some of my milk hoping it would coat my stomach.  I even went to the bathroom in hopes that I would throw up.  Nope.  We went back to the room so he could finish packing and I laid down.  I was feeling kind of better.  We said our goodbyes and headed our separate ways. 

I made it home with no incidents.  I was munching on pretzels so hopefully that helped settle my stomach.  I did have to pull over and sleep for a while because at one point I was falling asleep at the wheel.  It was scary!!  And of course it was right where there were NO rest stops!  I did find one eventually and slept for an hour and a half.  Woke up still exhausted but my stomach was pretty good.  And here I sit still kinda iffy but no where near where I was this morning!  And I am still super tired.  

I was so mad about this all though.  I had planned to meet up with Jenn and Tina.  Tina and I were going to do dinner and then I was going to go to Jenn’s for a candle party.  Well thankfully Shawn’s doctors didn’t want Tina meeting me so I didn’t feel bad about canceling on her.  But I was so bummed to cancel on Jenn.  I wanted to meet both these women so bad!  Plus I was dying to hear all about Shawn’s transplant from Tina!  It just sucks because instead of enjoying my 36 hours up in Boston I spent the entire time trying not to loose my meal.  I wanted to see some museums and visit historical places.  Nope I got to do none of that!  So now I will just have to go up there again sometime so I can…maybe!  

I am also going to look into a portable O2 concentrator that I can buy on my own.  Insurance won’t pay for a portable one and my big one is way too large to take places with me.   

But on to some fabulous news!!!  I called my Dr on Friday to find out if I could do the study for inhaled Cipro.  I left a message with the NP and told her to call me back.  Well about 15 minutes later my phone rings and it is the director of the CF program for clinical studies at Penn.  She was super excited to hear that I was interested in doing the study.  She told me it would start in about 2 weeks and that she would talk to Dr H and the NP and see which study I would be best suited for – Azli or Cipro – since they are conducting both.  She told me I was her first interested candidate!!!  It felt great to hear that!!!  Now I just have to wait for the Dr’s ok and then I will be in the study!