life

I haven't posted much as this has been a sick week. Started with lots of breathing problems last weekend, fever monday etc. Doctor put me on steroids and zithromax....steroids caused a pretty bad reaction emotionally as they are known to do and I hate that but anyone who has been on on steroids high doses inparticular knows that you can't help it and can't control yourself.

So I have a lot of stubborn thick mucus in the bottom part of my left lung...that lung is harder to clear anyway because of pectus excavatum. Doctor called in MucoMyst for me tuesday..its been probably 2 years since I've used that drug and as we found there is currently a shortage. Finally found that CVS had some in stock and according to their pharmacist he can get it with no problem. MucoMyst has helped some ...my lungs are for sure better than pre-mucomyst

So I have had very little of a life this last week. Eating, drinking, sleeping and doing treatments sums my week up. Felt enough better this weekend to get out a little bit.

And of course the CF tummy issues strike today.

I forsee this being a week of rest and treatments...trying my hardest not to end up in the hospital because #1 I don't like being in there!!! and #2 lung patients and hospitals are not good things. So it becomes "hospital at home" instead. We've got all the equipment and pulse ox etc and stay in close contact with my doctor.

I am frustrated and at the first of the week was going through the "just let me die" and "I hate this" phase. But I know God has put me here for a reason...and as long as He keeps me here that reason isn't done. And really CF and all I have a good life. I have a family that loves me, good doctors, access to the medications and treatments I need, lots of friends, the CF community is awesome, lots of things I enjoy doing, a God who loves so much he sent His son to die for me.