The post I didn't want to write

I've had it in my head for over a week that today's post was going to be titled "I'm free!" because today was the day I was finally getting the PICC line removed. I even planned to take a picture of my unencumbered arm.

Instead, this sits curled by my side...

Here's the roller coaster of my last month:
February 4th: I had a regularly scheduled CF appointment and wasn't expecting much. Instead I found out my lung function had dropped a drastic 15%. The decision was made to start a two-week course of IV antibiotics in response to the drop and in preparation for my upcoming sinus surgery.
February 7th: I had the pre-op for my surgery with my ENT doctor, then with the anesthesiologist at the hospital, then ran to another hospital to have my PICC line inserted.
February 8th: I began IV meds.
February 12th: The day of my scheduled sinus surgery we were buried in snow and ice. The surgery was rescheduled. Because the surgery was rescheduled the IVs were extended from 2 weeks to 3 weeks to ensure I would still be on antibiotics after the surgery.
February 24th: I had my sinus surgery (which went well and was successful)
February 26th: My sister and her boyfriend Robin arrived (yay!)
February 27th: My parents arrived (also yay!) and I had a follow-up CF appointment. Even though it was only 3 days after my surgery, my lung function was up 13%! That means I was only 2% below my original lung function! My 3 weeks of IVs were set to end on March 1st, but we decided to keep the IVs going until March 3rd to make sure I had a full week of IVs after the surgery, then, as long as I was feeling well, the PICC would be removed on March 4th!
March 4th: I am feeling achey. Like, flu achey. Or mastitis achey. Either way, it's a bad sign. I had no other symptoms and felt all the meds were kind of interfering with my system so we decided to stop the meds but leave the gosh darn PICC line in (I still can't shower without help!!) for another week until I could have another follow-up with my CF doctor.
March 13th: I had another follow-up CF appointment. My lung function has dropped 11% again only a little over a week after stopping IVs. So I'm pretty much at the same number I was when we started this mess. The decision was made to re-start IVs with a different drug this time. Only problem? This one is every 6 hours (instead of every 8) and runs for an hour. And I'm supposed to sleep when? I'm also doing a chest CT scan and based on those results a possible bronchoscopy (going into my lungs with a camera) to see if we can figure out what's going on. I would go into more detail about why it's being done, but it's all rather gross and boring.

*EDIT: Please note, I use the term "percent" when referring to my lung function ups and downs but I really should say "percentage points". What I  mean with the above numbers is that, if I had started with 100% lung function, it dropped to 85%. Then went up to 98%. Then back down to 86%. If that makes sense. I tend to not like to share the actual numbers for various reasons.*

This timeline doesn't include the almost daily battles I've had with pharmacies and insurance to get my routine medications. We were forced to switch insurance in January so I've been trying to get all new prescriptions sent to all new pharmacies and just keep hitting walls. Knowing the switch was coming I had ordered a 3 month supply of all of my meds in December so I haven't had to deal with all of this until now. Yes, I should have started working on it sooner... but who can blame me for avoiding all of this??

The timeline also doesn't include the fact that I've had multiple allergic reactions (skin only!) to the dressings and antiseptics used on my skin and have wanted to sever my arm off because of itchiness for 4 of the last 5 weeks (I had one week in there where everything was just right and I wasn't itchy. I think I've now finally pinpointed the exact causes of the problem). Nor does it include all the follow-up ENT visits to vacuum out my sinuses (with no sedation or numbing!), or the fact that I spent an extra 30 minutes at my ENT visit today trying to get a torrent of a nosebleed to stop (which the doctor was completely surprised by and tried his best to get it to stop which seemed to only make it worse and worse).

A bloody massacre?

As I just commented on my aunt's blog, I'm actually quite thankful that I chose to participate in a photo challenge called "100 happy days". I post a picture every day to Facebook of something that makes me happy. On some of my worst days I've still been able to find something that makes me smile. Sometimes it's quite small (donuts!). Other days it's something big (all my family in one place!). But altogether it's helped me focus on the fact that even when it seems like everything is going wrong, there is still so much to be thankful for.