Therapy, Pooping, and a Big Decision

I've been home for about a week and a half now and for the most part things have gone well.  Jake has been doing my CPT every night, which has helped a lot.  I'm not good at doing my CPT at home because it usually includes using "The Vest" which is pretty uncomfortable.  The Vest inflates and then shakes the stuff loose in the lungs.  It's just overall uncomfortable when I'm doing it and then I itch like crazy when I'm done.  I think that just has to do with the friction it causes, but still.  I finally asked Jake if he would be willing to do manual CPT and he reminded me that several years ago he pushed pretty hard to do it for me and I, uhm, well, not so politely said no.  I can be really stubborn when I want to be.  Needless to say, he was just short of thrilled when I asked him to do it for me.  

I think manual does a much better job than the vest.  The vest was designed to give CFers more independence and there are also a couple of other things I can use (percussors, Flutter, Acapella) but I don't really like any of them.  I much prefer manual CPT.  CPT involves him pounding on my back, sides, and chest while in different positions for 3-5 minutes at a time.  This is also called "postural drainage".  Depending on whether we're doing "uppers" or "lowers" I sit or lay in different positions in order to get the mucus to drain in the right direction.  It may sound painful, but really, when I get it done in the hospital I can end up falling asleep.  Right now we're doing 3 minutes a side and will work up to the full 5 minutes.  There is quite a bit of technique involved and the muscles really have to be built up.  Jake is doing an awesome job.  He has good technique so he gets a good "popping" sound (a sign of good technique).  I'm glad I finally have a better attitude about the things I need to do...it makes me feel better all around.

Today was a little tougher.  (This is one of those delicate subjects that I hope I won't gross anybody out with...I'll be careful of what I actually write, but you'll get the idea.  If I still gross you out, I apologize! :-D)  Back in January I had an intestinal blockage that made me spend an extra 3 days in the hospital.  I was in so much pain and was so bloated you would have sworn I was pregnant and in labor.  For 3 days I drank some pretty nasty-tasting liquids (to get things moving), MiraLax out the whazoo, I wasn't allowed to eat anything and had enemas 3 times a day.  If things hadn't started moving, surgery was the next step.  I apparently have a shrinking of the intestine right before the colon (they found this in a CT scan) so that can cause stuff to get backed up.  I tell ya, I have never been so happy to poot and poop in my life!  

Anyway, I have recurrences of this every once in awhile, but since I know the signs I can act pretty fast.  Today, though, it snuck up on me.  After breakfast I was so full that I knew I already had a problem.  I drank a glass of milk with MiraLax and then went back to sleep for a couple of hours.  My stomach wasn't nearly as distended when I woke up and I felt better so I ate some Jell-O.  I guess I wasn't better, because even with that little of food in me I was incredibly full again.  So, I've been pretty uncomfortable all day.  I haven't eaten anything since the Jell-O and am a little nervous to do so.  I guess when I'm done with this I'll drink another glass of MiraLax and then try to eat a little something, because I am SOOO hungry.  Hopefully, things will get moving again!

Jake and I made a fairly big decision this past week.  We've decided that after the first of the year, Jake is going to cut his hours at work down to 15 hours a week.  We want to spend a lot more time together, not to mention Jake will then be able to help me out a lot more at home.  We don't want to waste the time we have together.  If the next few years really are all we have left, then we want to make sure we're making the most of every moment.  Jake will still be going to school, but we will have a lot more time together than we do now...which is very little.  Since making this decision, Jake has had so much peace about it.  He really wrestled with it for awhile but he decided that this was the right decision.  We always have fear about what other people will think about our decisions (it's a sickness, I tell ya) but after deciding this was the right thing for us in our situation, we've had nothing but positive feedback.  Our dearest and closest friends, Kati and Eric, even told us that they've been praying that we would do this!  Mom and dad have been awesome.  They know that this means we're staying put for the foreseeable future, but they've made it clear that they want this for us too and are happy to have us stay.  We are so incredibly blessed by parents and friends who love us both so much, are willing to help us in any way they can, and continually support us.

I have never lost hope in healing or a cure or significant medical breakthrough, but Jake and I really had to look at what the possibilities are and what my doctors and history tells us will happen.  We are really looking forward to our time together and the memories we can make that, no matter what, will never be taken away.