#24 - Mixed Blessings

Date Sent: Mon, Sept 8, 2008 at 1:39 PM

Well, it seems like AGES since I've sent out an email update. I know it's been way too long because I've started to get several phone calls a day asking how things are going. Sorry for the lapse in communication. Life has been crazy around here. With it being the end of summer and the unofficial beginning of fall we have a lot more going on. I'm part of a Tuesday morning ladies Bible study, and a MOPS group - both of which are starting again after taking the summer off. So, I've been rushing trying to finish projects before there is more on my calendar (more to try to squeeze into my already tiring days). I really look forward to both of those activities, though, so it's well worth the spent energy!

The last update I sent described my visit with my cardiologist about the redness/infection that was around my hickman catheter. He gave me an antibiotic, which made us much less worried about the infection spreading into my bloodstream. But by the end of that same week, the infection still wasn't clearing up. So, we took photos and emailed them to my doctor in Pittsburgh. I told him that I thought it was continuing to spread because when I was at the ER to have the infected suture taken out, they used a thicker (but still clear) dressing over the site than the one we used at home, and the moisture produced by the infection had gotten trapped. I asked my doctor permission to remove the dressing and let it air out. After seeing the photo, he agreed with me, and gave permission to remove it for "several days" to see if that helped. We prayed really hard that as it dried out, we weren't swapping one infection for another one as the insertion site was exposed to other airborne germs. It ended up taking just over two weeks, but finally cleared up! Praise God!

At the tail end of those two weeks, Alex (our 3 year old) got a cold, and gave it to little Harrison. I was VERY nervous caring for them because the last time I got a cold (in March), I was hospitalized again because it made it so difficult for me to breathe. So, I prayed extra hard and used almost an entire bottle of hand-sanitizer. God kept me safe and I didn't get the cold. Praise God AGAIN!

I had mentioned in a previous email about how horrible I felt each time (3 times/day) that I took my Viagra (which opens the blood vessels in my body, including my lungs - helping me to breathe easier). When I emailed my Pittsburgh doctor the picture of the infection, I asked him about the Viagra also. HE GAVE ME PERMISSION TO TAKE ONLY HALF OF THE ORIGINALLY PRESCRIBED AMOUNT!!!!! I was instructed to continue increasing the dosage of the iv medication. But I was finally told to take less of SOMETHING! This decrease has made a dramatic difference! Praise God YET AGAIN!

I've been getting an increasing amount of bumps on my arms and legs for a couple weeks now, and thought it was because I had started to use bleach alternative on my bath towels. So, I rewashed everything thinking that the bleach was too strong (something similar happened to me as a child if my mother used certain laundry soaps). On a whim, I phoned the Pittsburgh doctor this past Thursday evening and left a message wanting to know if I could use hydrocortisone cream on the bumps (because they itch), or if that would interfere with any of my meds. They returned my call on Friday and asked me more questions about the braille-like bumps. Dr. Alvarez told me not to use the cream. Apparently I have "Flolan rash" - a sign that I'm having an allergic reaction to the drug that's keeping me alive. The current plan is that I'm supposed to stop doing any increases. (I was supposed to do another increase later that same day, so praise God that I decided to call and check about using the cream!) We'll talk again later this week (after we see if it gets better/worse) and he'll decide at that point what to do about it. At this point it's very possible that I'll have to decrease the amount of Flolan that I'm taking.

Considering how much I dislike the week-long side effects I get when I increase the Flolan, I guess it's kinda a blessing (maybe?) that the doctor doesn't want me to increase anymore (at least for now). The increases have been too much for me to handle doing them every week, so I've generally been increasing two weeks in a row, and then taking a week off. This "longer break" should give my body time to get over some of the side effects. So, praise God for that, at least.

This past week I was tired again. I spent most afternoons on the couch (holding my sleeping Harrison) - and enjoying the time both because these days with him will pass way too quickly, and because I didn't have the energy to be productive. Aaron ended up doing all the cleaning (all that got done anyway) over the weekend - praise God for my AMAZING HUSBAND! I think this sudden tiredness correlates to the increase in the amount of bumps - my body is reacting to the drug by the bumps AND by the tiredness.

Maybe this is as good as it's going to get for me. Maybe I've peaked on how much I can do, how much energy/stamina I have, how good I'll feel - - - that is, until God decides to heal me. I was looking forward to feeling "normal" eventually because of this drug, and sometimes would forget to thank God's for His hand in all of this. I took for granted how much better I felt already rather than focusing on being grateful for how far God's brought me. Oops! Well, now that I've been reminded to praise HIM MORE rather than just this drug, I'm not planning to make that mistake again.

Last week (about an hour before I phoned the doctor asking about using the cream on my bumps), a friend pointed out a verse in the Bible that she thought applied to me. It's one of those passages that might not mean anything to you - that is until you hit that point of extreme desperation because you feel so overwhelmed that you ask God if He really knew what you could handle. Those are the days you beg Him "to take this cup from me" and forget that the rest of the verse says "yet not my will, but yours be done" (Luke 22:42). I guess the difference is that you can handle so much more if you "cast all your cares on Him" (I Peter 5:7) like we're supposed to, rather than trying to cope alone. I later took the time to look up the passage ... and then kept reading. I'm SURE the passage ended up meaning so much more to me than my friend imagined. As I read it even now, so many friends come to mind for whom it would apply (even though their life situations/pain might be the result of different trials than what we're going through). Some of those friends get these emails, so I wanted to include the passage. But even if you're not going through one of life's overwhelming trials right now, the last two sentences apply to you anyway - because of your faithfulness to remember me and my family in your daily prayers.

2 Corinthians 1:3-4,8-11
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. ... ... We do not want you to be uninformed, brothers, about the hardships we suffered ... We were under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many.

Thank you for your continued prayers as we wait and see how God uses this most recent "hiccup" for His glory.

~ Julia