Don't Give Up

Well last week the place I worked officially shut down.  I am upset and happy about it at the same time.  I am upset because it was perfect for me.  I didn't care for what I was doing, but it was a job that paid money and allowed me to stay at home.  This is important for me because I have gotten too sick to be able to go out to a workplace every day.  I am going to look and see if I can find something small at home to make some money, but I won't be too devastated if I can't.  I am a little happy about it due to the fact that I can spend more time taking care of myself and maybe getting back into some of my little hobbies.  Between taking care of myself and working, I didn't have the energy to do anything else.  I have some moments when something is going on.  For the most part though I am sitting at home doing something health related or laying around relaxing due to lack of energy.  I try and do what I can when I get the chance, but I honestly can't wait until I have the energy to actually do things again.

Today I went to the doctors and did some grocery shopping at Target after.  I was going to go to Wegmans too, but I was too tired so I decided to save that for Wednesday and come home. I just hate how I don't have the stamina I use to. I want to go go go, and I am being held back.  I hate sitting around feeling useless.  I am so use to always doing something and staying busy.  Now I have days where I am lucky a shower doesn't exhaust me.  I have to realize my limitations and learn to slow down.  I keep telling myself this is temporary and soon I will be running around like I use to.

About the doctor’s appointment I went today...nothing special. My PFTs are still at 32 so even though I am feeling a little more crappy than usual, I am going to wait before I go in. The only change she made to my meds was adding an acid pump inhibitor to try and get me back on pancreatic enzymes.  For those who don't know about pancreatic enzymes: They are synthetic enzymes taken in order to digest food.  Another organ affected by CF is the pancreas.  The enzymes that are made in the pancreas are not able to escape into the stomach therefore causing food to not be completely digested or absorbed into the body.  I took enzymes for most of my life.  When I was 17 I took a test to see if I needed them and they found out that I was pancreatic sufficient so they were discontinued.  Well as I got sicker, my exacerbations have taken a toll on my pancreas making it less efficient and adding diabetes to the mix.  So they want me to take the enzymes again.  Some of the enzymes in my pancreas are still getting out, but I am right on the line between enough and not enough.  Because of that they want me to have a little help.  I have tried continuously to get back on them, but haven't been able to tolerate them.  They are giving me really bad cramps, upset stomachs and acid re flux.  So she wants me to give Prilosec a try and see what happens.  I told her I would give it a shot.

Well I am going to get started on my nightly vest and nebs, watch a little TV and then head to bed.  Until there is more to report...