November 2012 I went to my doctor not feeling my best, my Pulmonary Function Test were actually not that bad, but my dr though it would be best to catch anything early and go on IV antibiotics before the holidays came. During this appointment I was told that my insurance had a lifetime limit that was almost used up. I would not have enough left on my plan to get me through another hospital stay. This was, as you can imagine, quite a shock. My insurance has just stopped helping...I thought to myself, "can they really just tell me I can't go into the hospital when I need to go in?" Thank God my parents have Kaiser insurance and I am on their plan, and thankfully Kaiser has a CF clinic in LA. So I ended up being admitted through Kaiser LA ER for that hospital stay. I felt better soon after being on the antibiotics. I went home to finish up the second week. After being done with the antibiotics for 2-3 weeks I started feeling sick again. At my follow up visit my lung function was at 49%, less than it was before I went into the hospital. My dr told me to come back in a month and we would go from there. Finishing the semester and having some time at home helped some, but by mid January I was not feeling well at all. I was hoping that by increasing my breathing treatments I would feel better and avoid going into the hospital again. The first week of February classes began and I was feeling even worse. By the end of the first week I developed a fever. That was what I needed in order to realize I needed to call my doctor. I was admitted that night. An x-ray showed that I had right sided pneumonia. It was a good thing I went it when I did. This was my first time ever having pneumonia, and it was not too fun I might add. I also must add that it has been quite stretching to be going to a new CF center that is newer and not as experienced as USC. Don't get me wrong, everyone is really nice, but there is just a big difference from USC. This has forced me to trust God in a new way. I have realized that ultimately it is God who is in control of my healthcare and no matter what doctor is treating me, God is behind everything. So though it is often frustrating, I am learning to trust God with all aspects of my health and life.
I finished this last round of IV antibiotics mid February for the pneumonia. I felt a lot better when I was on the IVs, but within a couple weeks I felt sick again. It has now been about a month since I have been off of the antibiotics and I am feeling worse than I have felt in a long time. It seems this has been the same pattern since November. I recently went back to USC, just for a clinic visit, to get another opinion and set of eyes to hopefully see something that has been overlooked. My lung capacity this visit was at 47%, and all my other numbers (small airways...etc have all gone down. I was looking at my history since I have been at USC starting in Jan 2010, and my results are the lowest they have ever been...eeeks) They took a bunch of tests, and I am supposed to go back in a couple weeks for results. So prayers appreciated for that!
These past few months, not surprisingly, have been very discouraging. I have not been consistent with my job at City of Hope since October, and I am finding it really hard to understanding how I am supposed to be a nurse when I feel so sick all the time. On one hand I know that God is faithful and has called me to be a nurse and will provide the job that fits me. On the other hand I don't know how to trust God because I don't see being a nurse in the near future as a realistic thing; or if it is realistic I don't want to trust God because the idea of working full time sounds way too exhausting. I have so many mixed and conflicting feelings. Right now I don't even feel well enough to do simple community nursing activities for a few hours a day. I have also felt discouraged because I feel like no really gets how I am feeling. CF is hard because on the outside you look fine, but on the inside it looks much different. I feel heavy in my lungs, I am constantly trying to hold back coughing when working with patients so they don't question me, I feel so exhausted that I have to make an effort to concentrate on things, and when I take a break in the bathroom I am coughing up blood tinged mucus and crying. I often feel like no one gets it, no one understands. But last night The Holy Spirit spoke truth to that lie - I was reminded that Jesus knows my/our suffering perfectly. We are not alone in it. He experienced the worst suffering so that we would not have to suffer eternally. I know that this momentary suffering is nothing compared to the glory that will be revealed (Romans 8:18).
I want to be resolved to trust God in the midst of this; that He is good, in control and faithful. I don't really know what other fancy words to say, I tried some but nothing is coming out right. I guess I would just say that we can live with the confidence that God is constant so that even when our circumstances are discouraging and make it hard to trust, we need to anyway because God's character is still trustworthy, it always has been and always will be. And I know there is joy He brings us in the midst of suffering. God is not easy to explain in words because His goodness and overflowing love is not something humans can fully grasp. He is worthy of all we have to offer.
Ephesians 3:14-21
"For this reason I kneel before the Father, 15 from whom every family in heaven and on earth derives its name. 16 I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, 17 so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, 18 may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ,19 and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.
20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen."
Psalm 31:14-15
But I am trusting you, O Lord,
saying, “You are my God!”
15 My future is in your hands.
saying, “You are my God!”
15 My future is in your hands.
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