Sunday, February 28, 2010

Pseudomonas is a B*tch

It's been quite the fiasco recently with this infection and I think I've nailed it. I've been having these exacerbations back to back for a few months now. Each time I'm put on Prednisone (with out an antibiotic), opens up my airways, wean off the Prednisone, and we're back at square one.

It's been driving me absolutely insane I have to admit. I'm not one to let myself getted bogged down with health stuff and be all negative, but I wanted answers. So I sat down and thought to myself, what the heck have I done differently in the last several years? Because certainly something has changed. Let's face it, yes I know with CF there may come a time when these exacerbations will hit and I won't have an answer, but I'm not there and I KNOW it.

So after many hours on and off I think I got it figured out! I basically stopped TOBI recently! Bam, that's it! I should've known better since I've actually been able to taste the infection/Pseudomonas. Since TOBI is only every other month, there's 2 months out of this period without TOBI or anything to fight off the lovely Psuedomanas. (Colisitin was the alternate on the other months, but it inflames my airways) Then when I was my TOBI month I weaned way back because I was completely losing my voice. I went to 1x every other day. Dumb move, because clearly nothing has been in there effectively for 3 months time. My lungs have been a playground for the PA to enjoy. Not cool.

So I called Hopkins told them all this and they agreed which felt great. So I'm back on TOBI whether I lose my voice or not again, I don't care. This was a tough lesson to learn, but I'd rather lose my voice then my mind again.

I'm also happy to say that my FEV1 is back up beyond baseline!! *Jumps for joy!*

Wednesday, February 24, 2010

FDA Approves AZLI!

U.S. Food and Drug Administration approved an important new inhaled antibiotic called Cayston® (aztreonam for inhalation solution) today for the treatment of cystic fibrosis (CF). The drug was made possible by significant support from the Cystic Fibrosis Foundation, including a $1 million investment by a Foundation subsidiary to help develop the therapy.

Developed by Gilead Sciences, Inc., Cayston offers a much-needed antibiotic alternative for CF patients who battle recurrent lung infections and develop resistance to existing antibiotics.

And I CAN'T WAIT to use it!!!!! My docs @ Hopkins told me last month that'd I'd be taking this as soon as it became available. I hear it's done a lot of positive things for those who were in the studies. I love hearing positive breakthroughs like this. Woo Hoo!!! Let's keep em' coming :)

Sunday, February 21, 2010

Baby..I I I can't wait!

Ha ha love that 80's song, and no it's not me announcing I'm having a baby either.... Tomorrow I can't wait to finally get back to my full week GYM routine!!! Woo Hoo!! While I did get a day in last week and it was amazing, I'm missing my at least 4 day a week routine due to my recent medication combo and 2 back to back blizzards. It makes me feel SO GREAT both physically and mentally. So baby...I CAN'T WAIT!!!!

Our weekend was great too. Yesterday we went to a new brewery with some of our best friends, so needless to say it's always a great time. Today also marks myself becoming a God Mother again. It was wonderful, and I am just thrilled. It's such an honor to me, and I am so grateful for it.

Well that's it, the Gym bag is packed, and I'm ready to hit the ground (or treadmill) RUNNING!

Saturday, February 20, 2010

SO Thankful (CF stuff)

I'm thankful for so many things all the time, but especially this week after this crazy infection thing seems to be under control now.

I'm thankful I'm back to work after missing only 2 days, but still it's nice to feel "normal"

I'm thankful that my blood sugars are normal. I thought I felt them going high this week after being on some antibiotics, but I checked them several times now and they been normal, *sigh of relief*

I'm thankful the Cipro is doing it's job and my lungs feel great!

I'm thankful I was FINALLY ABLE TO GO TO THE GYM AGAIN!!!! I did 2 miles, and several different forms of weight training yesterday.

I'm thankful my sinus headaches are gone after getting back on my sinus rinses. Gross, but wow are they great.

I'm thankful for my wonderful CF friends/community who are there to answer questions and give advice when I need it. It's great to know someone out there can relate.

I'm thankful for my wonderful CF Nurse who gets back to me so quickly after I have questions or concerns.

I'm just thankful to feel Healthy, and I know how much of a gift that is.

Wednesday, February 17, 2010

The Flip Side

So as it turns out, the exhausted feeling I've had since my Birthday was an infection brewing. Boo. While no one likes to be sick, I'm trying to pull the positives out of it.

The major insomnia I've had has brought me to Tylenol PM...aka my new best friend.

I've learned never take antibiotics on an empty stomach or you'll vomit your head off, uncool.

We think Colistin may be the culprit this time, thank goodness for my Mom remembering that years ago, I had a bad time with Colistin and that's why they stopped it.

I've had the chance to have a Golden Girls marathon, as well as Food Network which I love.

The antibiotics are definitely doing their job and I feel a ton better, and PFT's are up!

My sinuses are a mess, which has helped me to remember to do my gross sinus rinses, DOH!

Watching Food TV has inspired me to make a ton of new recipes (I LOVE to cook)

I've gotten hours and hours of quality time snuggling with my dogs :)

I've made a list of projects/ideas for around the house (wait this could be dangerous ;))

I've realized I need to be patient, and realize that 1 day can make a ton of difference.

I still miss the gym like crazy, but am hoping to FINALLY get there Tomorrow!!!!!!

Back to work in the A.M. :)

Sunday, February 14, 2010

I'm 30 :)

Some of my awesome friends and family

It was kind of hard to say goodbye to the 20's for a lot of reasons. So many great things happened in them, and thus far was the most eventful decade for me. Let's engaged, got married, graduated college, got my first RN job, had my first pregnancy (miscarriage), traveled to all the places I ever wanted to, got my/our first house, became an aunt, became a godmother. (I'm sure I forgot a ton, but you get the gist)...So here's to the 30's being EVEN BETTER :)

I'm officially a member of the 30's club, and to be honest I plan to rock this club ;) The day started out at Midnight with Scott singing to me :) I went into work, and my lovely coworkers who are so good to me have me a couple presents and I got great cards. I'm very fortunate.

That evening we met up with a bunch of friends/family at a local bar to celebrate. The snow kind of threw a wrench in our original plans, but none the less we had a GREAT TIME. We ended up staying out a good while, and had a little too much fun, because "grandma 30's" felt it the next day for sure! ;)

Yesterday Scott and I went out to continue the birthday celebrating, kinda cool having your Birthday on a Friday and having it be a weekend thing :) Anyway, we went out to Starbucks and got my favorite drink which was REALLY needed by the way. (I've had some mega insomnia the last 2 days). We then headed over to the mall for me to pick out my present from Scott....He bought me 1 Ct. Princess Cut Diamond Earrings!!!!!!!!!!!!!!!!!!!! They are gorgeous!!! Definitely something I will have forever to remember the big 3-0.

We later met up with my BFF and her boyfriend to have dinner at our favorite Mexican restaurant. And of course I had to show her my new bling ;) Overall it was a great 30th, and I'm ready for this new chapter to start...

Wednesday, February 10, 2010

The SNOW has caused.....

Well we had our blizzard last week which dumped over 2 feet here. Then yesterday into today we've gotten tons more. I LOVE the Snow so much :) I have noticed though that the snow has caused some things such as:

*My work had to close due to the snow, which has NEVER happened in the 6 years I've been there. I didn't think Nurses ever got snow days, woo hoo!

*I miss the GYM!! So badly too, I had to hold off for a week b/c of steroids/Cipro. Medically I can go back now, however physically it's just not happening yet.

*I've been inspired to cook a lot which I love. I've also been inspired to make some new recipes, like Coconut Shrimp, Baked potato soup, Twice Baked Potato Casserole, Mac N Cheese.....

*I've discovered "Pandora Radio" and am loving it!!! It's pretty cool, and plays tons of "The Cure" who'd have thought ;)

*The Snow has made me realize that If I ever have a baby born in the winter months, I'm simply not going to tell him/her their real birthday. I will tell them that they were born in the summer, that way a blizzard can't steal their birthday like their mothers ;) haha kidding.

*I've rediscovered my love for The Golden Girls :) I decided to plant myself in front of my TV and watch GG reruns during our storms, and am loving it!

*I've connected with bacon on a whole new level ;) Maybe that's because I've eaten it every single day that I've been off work, and can't get enough!

*I have a new best friend, her name is "Mimosa" and she's a wonderful combination of orange juice and champagne. We've gotten pretty close these last few days.

*I'm ready to plan a fun mini-outdoors type get away. I'm looking forward to some hiking, biking, and rafting type stuff.

*It's been discovered that I am really good at staying in my pajamas all day too, man I could really get used to this ;)

Tuesday, February 9, 2010

Working is WAY cooler than a Snow Day ;)

Ha ha ha, just kidding....But here I am waiting for my patients who have braved this storm, as we wait for the next 20 inches to fall :)

Monday, February 8, 2010

First Snow Day!

Well you know it's a blizzard, if a Nurse gets off for the weather :) I can't believe that they closed down my work, but I'll take it! Today was my first official snow day ever (as an adult) and it was fun! When I used to work in the hospital as a floor nurse on the Critical Care Cardiac unit, no matter what you had to be there. There was a storm a few years ago where most of the nurses had to spend the night. Luckily it was my last shift for the week so I got to leave. Believe me, I've been there when you HAD to work no matter what.

At this job that's been the case too until this storm. This was a record breaker here in MD, and I guess that's what it took to close down our surgery center. I go back to work tomorrow, only to hear that we are in another storm warning that is supposed to bring 12-20 inches our way. Yikes.

I was supposed to start back to the gym today since I'm officially off of Prednisone! Yippee!! However I can't get to the gym, so I'll try again tomorrow :) That is, if they're even open.....

Today Scott and I ventured out for a few minutes. Thank goodness for a 4-WD SUV :) Our roads are terrible, and the highway is only open on one lane. I don't mind it though, it's so pretty, and I do love the snow. We even managed to stop and grab some good old "Mickey D's" for lunch. Can you say cabin fever ;)

So here's to a fun, relaxing, lazy, gorgeous snow day!...or shall I call it, the calm before the next storm? :)

Sunday, February 7, 2010

The Shovel Surprise

This morning I found myself wide awake at about 7am. I made a pot of coffee, did the morning meds, then decided that I'd go outside and shovel out our driveway to surprise Scott. He started all the shoveling yesterday in the mounds of feet that we have here, and it was a ton of work. However most of the driveway was left undone and we have a L-O-N-G driveway, so I thought it would be nice for him to wake up and have it done :)

It was a surprise for the most part. I took Elektra outside with me, while Hooper stayed in bed with Scott. Well a certain Greyhound started to cry for his momma and sister, so he woke up Scott. While Scott searched around the house for us, kind of worried, he and Hooper finally found us outside witht the driveway finished!

It was a ton of work, but sure was great exercise for me! :) So in about an hour I had it all done, and felt like a million bucks exercise wise. I've officially thrown in the shovel until the next storm...which I hear could be Tuesday!

And we have a record breaker too!....My work is closed tomorrow!! As a Nurse I've never had a snow day in 8 years, woo hoo!!!!!!!!! Scott's off since he works for the state, but I've been jumping around the house like a little kid, I'm so stinking excited!!!!

Saturday, February 6, 2010

Blizzard 2010 and Birthday cancelings

It has SNOWED all last night and most of the day today!! Infact it just stopped about an hour ago, is it crazy that I'm sad it stopped? I LOVE SNOW!!!!! The more the merrier, it's so beautiful. I've wanted a snowy winter for a few years now, and I think we're finally getting it, hooray! The only bummer about this blizzard is that we were supposed to go out tonight for myself and my cousins's 30th birthday party. Hmm we're not going anywhere, so we'll try again next week.

Overall I think we got more than 2 feet of snow today. It was so much though that the poor dogs couldn't even go outside until we dug them an area to use. I also cooked a yummy pot of Baked Potato Soup as part of our snow day and it was good. I'm so grateful that we didn't lose power, it's been very windy.

Rumor has it that we're in for another snow storm next week!? :)

Friday, February 5, 2010

Friday Fill Ins (Blizzard Edition)

We're expecting quite a SNOW STORM here in Baltimore over the next 2 days. This could possibly be a record breaker too! We'll see.....

1. I know I'm ready to get back to the GYM on Monday. Having to take the week off due to possible medications interactions (tendonitis) has honestly been a drag.

2. December is such a fun and busy month, and always feels like it's the longest month.

3. You can't help but worry about things sometimes, even if they are out of your control.

4. I'm turning 30 next Friday; bring it on!

5. Where have you looked to see a SNOW STORM like this!?

6. On my iPOD, a fitness tracker with pedometer is now available.

7. And as for the weekend, tonight I'm looking forward to staying in and enjoying the SNOW STORM, tomorrow my plans include nothing but SNOW, but it was supposed to be my Birthday party.... and Sunday, I want to go to our SUPERBOWL party, but who knows with the SNOW STORM :)

Tuesday, February 2, 2010

This Place is A ZOO!

Yup, it kind of is a mini zoo in it's own way for a few days. Were watching my BFF's 2 chihuahua's, and wow is it crazy around here. It's actually quite hilarious, and we love it. All four dogs are getting along together well, playing, and being totally crazy. It just cracks me up that these dogs are so TINY compared to my two 65 lb-ers, LOL. I'm not used to dogs that I can hold in my hand, and fear stepping on.

I'm trying to do some research on the combination of Prednisone and Cipro being used together. According my CF nurse, this combination can cause severe tendonitis, or acute tendon rupture? Wow, and ouch, no thanks. I've been on this combo several different times in my life without problem, just kind of scary to think about. So I'll be avoiding the gym this week too unfortunately. That doesn't make me happy, but they don't want me "overdoing it" :/ Bummer.

I'm currently waiting for our latest SNOW STORM to hit us anytime now...I'll have to drive in it for work, regardless, but that's ok I love it! Hmm can Nurses get snow days? Ha ha No, I've never had one in almost 8 years.

Monday, February 1, 2010

I think I'm feeling Better...

So this weekend was a little rough. Saturday we ended up having a major snow day which was unexpected :) However I was so lethargic, and pretty much had no desire to do anything. Yet it was the kind of tired, where you want to do nothing but sleep, but can't. Thanks Prednisone. I also decided to start taking my Cipro on Saturday. Hopkins said if I felt I needed it, then to start it up. I started to cough some junk up, so I think it was a smart move. Then Sunday morning, I seemed to have a raging ear infection and it hurt so badly. I found some old drops, and they seemed to do the trick. *knock on wood* What on earth is going on with my body this weekend?

Today I woke up feeling SO MUCH BETTER! I think the combo of Prednisone and Cipro are just what I needed. Maybe I did get Scott's cold after all but just didn't really feel it until it was deep in my chest? Who knows.

On a happy note...Today is My Greyhound HOOPER's BIRTHDAY!!!! :)