Over the river and through the woods

The really exciting news is that I am done done done doing stuff/setting up/preparing/etc. for the two First Friday events my soap partner and I are doing on the 3rd. I am really happy with our display at Designbox, which has three containers halfway filled up with the soap on top of that - orange lentils with our scrub soaps, wild rice with the goats milk, and oatmeal for clear glycerin. Here is a picture:



Thanksgiving:

I felt like I overcame a million obstacles and back-and-forths about my trip to Cleveland to see my dad and step mom and her family Thanksgiving - a trip I had planned for so many months that the thought of giving it up was devastating. I ended driving my mom's brand new Prius up there! So nice of her to let me do that. And I had a wonderful, wonderful time. We all jive really well. Even after 5 days there, I could have stayed longer. Here is a picture of my dad and I right before I left:



Also while I was there, I ended up coming down with Todd's cold, which I had tried so hard to escape. Fortunately, with the herbs, Vitamin C, zinc, green tea and lots of water, my symptoms were pretty mild. But it definitely lingered, and has continued to affect both my lungs and sinuses.

To finish telling you what's up now, I have to fill you in on what happened after I had to stop Tobra b/c of the ear ringing a few weeks ago. The first few days after I started having worsening lung symptoms. I got pretty upset because, well, one, it's easy to be hyper-emotional when you're in the middle of an infection; two, I was worried about being able to have Tobra in the future; and three, probably the biggest thing, I didn't want to lose ground on the two weeks I'd already had on IVs!

At my two-week follow up appointment, when I thought I might be declining again, I was surprised to have my highest PFTs since 2007. But with the uncertainty of my lungs after the abbreviated course of Tobra, we decided to keep the picc line in and follow up after Thanksgiving. I did start to feel better after a couple of days - my energy was increased and my lungs started feeling good. And then...Todd got a cold. And a week later, so did I. And the cold lingered in my head and stirred up my lungs, which brings us to now.

I usually write a lot on here when I'm sick, partly to keep people informed and partly for catharsis. But I haven't really felt like it. A lot of the reason is that I have been frustrated with not knowing what is coming next...I need to be a more patient patient.I've felt like I'm planning my immediate future around the outcome of my next doctor's appointment - and I've been so long up and down (several months, really) that my internal compass is all out-of-whack: I don't know which of my instincts to trust.

So here I am, missing more work this week (but working some from home, thankfully.) I am almost out of sick leave so if I do IVs again, I'm going to have to do all the FMLA stuff. I am currently treating my sinus infection with two orals and an antibiotic rinse, but my lungs are feeling so sticky and congested. I really just want to feel good right now.

Adventures on IVs

Sometimes it seems like every day on IVs is an adventure. Here are some of the highlights and lowlights of the past week.

• Last Saturday, I had my first Tobra levels which were, thankfully, right on target. That means my dose was good and, more importantly, no rechecking necessary after a changed dose. (Tobra levels require two sticks, pre- and post-Tobra.)
• On Sunday night my arm started getting really red (partially) under where my dressing was. This required a visit from the nurse Monday morning (the third in four days). We discovered that I was probably allergic to a new type of cleaner they use in the dressing change kits. To be safe, we went back to the old cleaner and also used a new kind of dressing for people with sensitive skin. It has been better, but still a bit itchy under there. I think it's just the dry weather.
  
• Tuesday evening was the second evening in a row that I noticed slight ringing in my ears, more like a high pitch sound, actually. It only lasted about 10 seconds. Ringing in the ears can be a side effect from Tobramycin and can lead to permanent ringing - yikes! Tobra can also cause temporary or permanent hearing loss. Unfortunately, it is has happened to a good number of people I know in the CF community. I've had the "ringing" happen before sporadically, but never consistently. My doctors and the home care company were quite concerned...they wanted to know the exact details. Luckily, I had Tobra levels scheduled again for Wednesday so we could make sure my dosing was correct. Unluckily, I've found out hearing loss/permanent ringing is something that can happen even if your levels are in check.
  
• Second set of Tobra levels on Wednesday also ended up being good. Yay! Unfortunately, the second poke hurt like hell. In fact, it still hurts. I admit, I can be a baby about blood draws, but ugh. Sometimes it just hurts like hell. Fortunately, not very often. Question mark on where they are going to draw my next set of levels now that my good vein is out of commission for a while.
• Mid-week was when I really started feeling better from the meds. The biggest change is that my energy is so much better. But my temp is also down, lung pain gone, appetite WAY up...now I'm just waiting for things to look a bit better with my lungs. Still, it's so much easier to deal with all this shit when you are feeling halfway decent.
• Both Wednesday and Saturday, we went to see two good Hurricanes games. Not health related, but still exciting. :)
• Friday night - I had my first beer in a really long time. It tasted really good. Recently, I have basically cut out drinking and caffeine - just to give my body and my mind a break. I like it.
  
• Last night and tonight, I got an "itchy arm" in the arm my picc line is in. It started with a "scratch me" feeling and before I knew it, my arm was all red. No idea what caused it but I hope it's not related to any of the medicines I'm on.
• Did I mention I'm not looking forward to Tobra levels on Wednesday?
  

I guess that's all for now.

Update: Monday am - discontinued Tobra due to overnight ear-ringing (tinnitus). While I am happy to have one less thing to do and not get levels drawn anymore right now, I am a little freaked out about what this may mean for the future. It sucks to have complications with (what might be) the only thing to really kill one of my bugs.

I tried to talk Dr. C into half-dosing until Thursday (which will be the 2 week mark) but he didn't think that was a good idea. He cited some study that shows most people get all the clinical benefit they are going to get after 10 days on IV antibiotics, and I am at 10 days now, so not the worst thing in the world. Honestly, I would be more freaked out right now if I wasn't feeling better. In the future, he said, we may either do Tobra or Tobi, but probably not both at once anymore. And I am to follow up with the ENT for a hearing test in a couple of weeks. Many hearing complications during IVs can be reversed, but some, sadly, cannot.