Made of unstable molecules...

There's nothing like feeling you are made of unstable molecules..both mentally and physically.

If I could sum up the past three months in one word, frustration would be it.  I've had to work extremely hard to keep a positive attitude going and the effort is exhausting.  I haven't felt good and because of that I haven't felt motivated to do or accomplish much.  So then I feel guilty that I am wasting the precious time I've been given.  I'm struggling but I'm not giving in.

After a December of IV's that were ineffective because of a highly resistant strain of Pseudomonas, I was right back to coughing all night and feeling breathless with any exertion.  I had extended my treatment to the extra fourth week because of all the mucus that still seemed to be there despite all my efforts. Because of the extended time on Tobramyicin, my cf doctor told me to pay attention to my ears for any ringing, fullness, or hearing loss.  If I had any of those issues, I was to stop the drug immediately.  No issues presented themselves so I thought I was in the clear.  Not so.

Five days later I woke up to vertigo and it has been my constant companion ever since.  It was December 29th, the day after the wedding.  I thought it was just an inner ear disturbance that would work itself out in a day or two since I've had that before. Again, not so.

Vertigo is funky...everything shifts and moves even when you don't.  However, walking is the worst.  I feel like when I walk, the world bounces.  If I move around too much or even use the computer very long, I have to sit still or lie down to make the moving sensation stop.  If I don't, I start to feel sick to my stomach like I've been on one too many carnival rides.  Sometimes I stagger to regain my sense of balance which is quite entertaining  To make matters worse,the vertigo seems to be getting worse over time, not better.  Discouraging.  Aggravating.

I'm still waiting to see an ENT specialist and get some vestibular testing done.  Hopefully they can give me some strategies to make things more bearable until it subsides.  At my clinic appointment on the 28th of January, my cf doctor told me that the vertigo will go away eventually.  I just started to cry.  I was so relieved to know I wouldn't have to put up with it for the rest of my life--like I had heard and read online.  She said all of her patients who have experienced vestibular toxicity have recovered their normal balance.  I felt like the weight of the world lifted off my shoulders.  I had even begun to rethink my transplant plan because I was looking forward to being able to run and dance and just move without so much effort and now the dizziness would still take that away.

And now, here I sit at the end of Day 10 in my private room at the Denver Bed and Breakfast.  My clinic visit pft numbers of 25% were low enough to convince me that I needed to do something even if only a month had passed since my last attempt at fixing things. I was hesitant to take more medicine in case they messed up my ears more.  However, my new cocktail of Colistin, Meropenem, Ceftaz, and Vancomycin seems to be working well.  I am encouraged.

I had to cancel my appointment at Duke this week and I will miss Christina's graduation from bootcamp tomorrow. So frustrating.  I was trying to wait it out so I could go to them both, but once I found out that getting on the plane would make the vertigo worse, I gave up.  It was bad enough feeling like I was breathing with an elephant on my chest, there was no way was I gonna risk puking all the way to North Carolina or Illinois as well.

Here's hoping things stabilize soon. :)