Dear Voice I Miss You!

Last night before bed I got word that the 3rd CF'er that wasn't doing so well lost his life :( My heart breaks over this situation once again, and It is simply terrifying. It makes me so grateful for the wonderful CF'ers I've met now on the sites, chats, blogs, and Facebook. It's nice to have these friends and be able to offer support to eachother during these sad times.

Work went surprisingly well today, especially for a Monday. I noticed that I was extremely tired towards the end of the day and had to come home and take a much needed nap. I collapsed right on the floor with the pups by my side, ahhh naps :) I finished up the mound of steamed crabs for dinner too, yummy!

My CF nurse at hopkins called me today to check on me. I'm currently on the Prednisone still for this lovely inflammation thing going on. I do notice a difference but not like I hoped so we're changing the dosages a little bit. Instead of me being on 30 mg already, we're keeping me on 40 mg for 2 more days and will taper me down starting on Wednesday. She also told me not to exercise today and to give myself a break. Hmmm I'm not sure how I feel about that one. Yes I am very tired hence the nap I needed which is rare for me to nap. But...I know that exercise is key. This nurse honestly isn't my favorite one to deal with, but I'm not trying to be negative or complain. I just don't know if she's right. My thoughts were, well I do try to work out 5 times a week. Maybe I will take today and rest, then get back tomorrow. That way I'm still exercising, still resting, but not losing a day.....make sense? She's also ordering me an Acapella to start to use. I still have barely a voice too. It's quite the effort to talk which is pretty straining and It actually hurts. I'm wondering if it's the TOBI making me so hoarse and my throat so raw? That could be why I'm having a hard time...just a thought. Maybe the Prednisone really is working but my throat is too raw and raspy to notice better breathing?

Well that's it for now. I'll keep my positive thoughts going and not let this get me down!

Emotions running wild

Today was very productive despite me still being voiceless and still having the inflammation stuff going on. The Prednisone feels like it is working so far, but I still don't feel 100%....I'm being a little impatient I know. The only side effect thus far from Prednisone is hunger. Last night I was in bed then suddenly wanted to devour a bag of Cheetos, so I did ;) I'm still a little inflamed and can hear I'm a little wheezy, but better than I was for sure. I also made myself get back outside today and bike ride for 25 minutes. I sure felt great afterwards and got an awesome meter reading from it. I pulled some muscles in my back actually doing the meter so that wasn't any fun. Sheesh. This whole flare up has definitely gotten to me and I just want to feel better. Oh and have my voice again too please.

Got lots knocked off the to-do list today which was nice. Washed both dogs, washed both vehicles, including vacuuming and interior stuff, cleaned the house, did laundry, and caught up on all the odds and ends type things. So I'm happy to have gotten many things accomplished.

Last night was great too. We had a nice time at the cook out and got to see baby Ally too which always makes my day. I made a new recipe hooray!! I love cooking!! It turned out really well too, it was a "Dessert Pizza" yummy! Pretty easy too, just rolled out sugar cookies that were baked, topped with cool-whip ( I also added almond extract), then topped with fresh fruit. I chose strawberries, pineapples, and peaches. It was delicious! Then on the way home we stopped by my brother and sister in laws for a minute and they gave us a ton of steamed crabs to take home! Now that's the type of carry-out I'm talking about! So that was tonights dinner in true Marylander fashion :)

Here's where the emotions come into play. I just found out that one of my Facebook friends with CF passed away today. I've been thinking of her and praying for her everyday. I'm so deeply saddened, scared, and heartbroken for her family. I also found out that another member of one of the CF sites I'm on passed away as well. So incredibly sad and It just makes you pause and sort of go numb. Also knowing that another Facebook CF friend is in critical health right now in the hospital awaiting transplant, it's just hard. I can't even explain it........Then on a much lighter note following these feelings..my cousin had a baby shower today and I couldn't go to it. I just still cry and have days where the miscarriage makes me so incredibly sad. I try so hard to think positive and use "The Secret" but at the same time I know that right now I couldn't sit in a room full of babies, and expectant mothers when I'm still devistated over losing that. Part of me feels selfish and I don't want to be that way. But the other part of me feels like that is normal to still be sad and grieve and it's ok to feel that way. I don't know....

So the emotions are running rampant today and I'm just sort of blah. Rest in peace to those CF'ers who are now gone, you will be missed :( This makes me want to kick CF's ass even harder than ever!