Happy Halloween!!

Today is one of our favorite days here at the Muir house. Scott LOVES Halloween, more than Christmas, I can't go that far ;) However he goes all out on this night and people really look forward to it.

I think what makes our house so unique is that he sets up a movie screen in the front yard and plays Halloween movies all night long. We don't play anything super scary, but some good classics and stuff that the kiddies in the neighborhood like.

Each year our best friends come over too, and partake in our tradition. This year on our Halloween menu is a lot of good stuff I think. I made crock pot chili, taco dip, sweet corn cake, 2 loaves of pumpkin bread, and we have apple cider (spiked) mulling as well. YUMMY! I can't wait to dive into the feast.

The food is ready, the movies are playing, the fog machine is doing it's thing. Now time to sit back, relax and enjoy one of our favorite days of Fall. Happy Halloween everyone!!

That's It I'm DONE!

Colistin has finally beaten me. I've tried every single trick I know on how to deal with the inflammation and these awful side effects. Last night was the final straw for me.

I noticed at work that I was feeling REALLY short of breath and overall like I'd been hit by a truck. So when I got home I did my FEV1 monitor and realized, my #'s had dropped about 15%!!!!! No wonder I was having a difficult time :( I took it upon myself to stop it (don't worry Hopkins will be made aware). I just can't keep doing this every other month and hurting my brain trying to work something out.

I think part of the problem is that I'm so used to being on an inhaled antibiotic ALL THE TIME that I think I need it. Maybe not. I'm so open to trying new things, so that's what I'm going to do now.

For the next 2-3 weeks that I should have been on Colistin I'm going to see if it's ok to do this:
Hypertonic saline 2x/day
Pulmozyme 2x/day (if appropriate)
Hit the gym like usual so no gunk can settle.

I'm hoping my plan works, if not I'm not sure what we'll do since the last time I was on TOBI it was a sudden nightmare of side effects as well. I'm sure there are a lot of CF'ers out there who aren't on something every single month. I need to see experiment because for now it's Colistin-1, Jess-0.

30 Minutes of Hell = :)

The sinus drainage reared it's ugly head again this morning. I could not only feel it in my head, but in my chest too, and it wasn't pretty. I checked my #'s with my FEV1 meter and wasn't thrilled to say the least. I was able to sleep without interruption and needing cough medicine last night which was so nice. Today, first thing, I loaded up on my Atrovent spray. That stuff is like a miracle for my sinuses. It stopped the drainage and let me get my workout in at lunch time...

Today at the gym it was a tough work out for sure because I felt so tight in my chest already. I decided to do the Elliptical for a full 30 minutes on a higher resistance than normal. It was killer! I was sweating SO much, and then began coughing my head off. Don't get me wrong, this is totally a good thing! :) By the time I was finished I was completely soaked and looked like I had just gotten out of the shower. Yowza!

After that workout my #'s improved drastically, and my sinuses seem much happier as am I ;)

30? More like 80.

According my birth certificate I am 30 years old. According to the clicks, grinds, and aches of my joints I'm apparently 80 years old. I was so wore out at work today that all I wanted to do was crawl into bed and nap. Instead I came home and got on our Elliptical for 20 minutes. Whoa momma, what a difference than the one at the gym. It was T-O-U-G-H! I'm happy that I survived the "at home" workout today, and am even happier to give my 80 year-old-feeling body a break....until tomorrow ;)

The Never Ending Sinus Rinse!

Along with the beauty of the Fall here in Maryland comes a vast aray of snot related issues ;) Today I'd like to focus on the Sinus Rinses. I've been trying to do mine definitely once, if not twice a day during this time of year. Last night before bed I decided to do one more before bed in hopes that it would stop the drainage and I'd be able to sleep all night, wrong.

Anywho....little did I know what was capable of coming out of these good old sinuses of mine ;) OH.MY.GOODNESS! Where the heck does it all come from!? Does it ever end!? It's SO gross, but man does it feel good to get it all out of there. Ok, enough booger talk, sorry. I just can't believe that doing these rinses twice a day and still I'm shocked at what's taking up residence near my brain. Ok, done, I promise.

Today's gym routine was a sweaty one. I bought a few shirts like the Under Armour ones, only these are from Target ( a lot cheaper, and boy's size) woo hoo. I must say these things are amazing! I did the Elliptical for 25 minutes, and the bike for 5 minutes, and lifted weights. Time sure does fly working out when you are being entertained by watching "Ellen."

Happy Monday All!

For Me, Exercise is proof.

For those of you who follow this blog, it's no surprise that I have a hard time on Colistin months. Though every other month I do my best and just, well, deal with it. I weigh the pro's and cons and it boils down to this....Fighting of PA vs. chest tightness, hence the "dealing" part.

On top of Colistin this time of year, be it my favorite, is awful for me health wise. Fall allergies are my enemy though I don't like to admit it. Every night for the past week, I've been woken up by horendous sinus drainage, coughing, etc. I should take stock in nasal spray, zicam, and lozenges this time of year. But it's the whole mind set of doing whatever it takes to get through something.

This morning I woke up all kinds of junky in my chest, sinus drainage, you name it, it was happening. I blew into my FEV1 monitor and was NOT happy at all. Although, it would have been more of a shock if I'd have felt "normal." Luckily, I did not. On Colistin my #'s go down because of the bronchospasms, but this was worse.

We had planned a big hike today, and I knew that exercise would be the BEST thing for me and to make my lungs feel better. After about 3 or 4 hours out on the trails and a total of a mostly uphill hike of 5 miles, my lungs got the workout that they NEEDED so badly.

I worked those lungs hard today, and am happy to say that when I got home and blew into the FEV1 monitor, my #'s were up by about 1/4. For me, exercise was my proof today on how important and imperative it is for my precious little wind bags :)

For the Love of Circuit Training

Yesterday at the gym I decided to switch things up. The reason being that I had a board meeting after work which I knew would go late into the evening. I had to figure out a quick way to get in my gym time, so I thought why not do some circuit training?

So on my lunch break I did a 30 minute workout which consisted of 3, 10 minute circuits. I challenged myself to really kick it up and boy did I! The first was 10 minutes on the Elliptical as fast as I could go. Then the treadmill for a 10 minute run. Lastly was the bike for 10 minutes. Overall I did about 4 miles which was awesome.

I can't remember the last time a workout was so intense! I LOVED it! I'll definitely be doing circuits more frequently.

Workout. Interuppted.

Today at the gym, I was rocking out to with my iPOD on the Elliptical. Little did I realize that my cell phone was ringing and it was the Alarm company from work. Apparently our alarm at our surgery center was going off. Rats! I jumped off the Ellpitical after 15 minutes to run down the street to make sure everything was ok. Luckily it was...

It was my fault, I forgot to lock the door. Ah well, at least the alarm was set right!? ;)

That's what I get for chit-chatting outside of work. Hello brain where are you?

Anyway back to the gym I went. I wasn't going to let an alarm going off interfere with my workout. So I jumped back on and did the Ellpitical for about 10-15 more minutes. I got my half hour in, some extra adrenaline from the alarm call, and over all happy lungs. Yay :)

My First Boss's Day!

I walked into work with to the biggest surprise yesterday. I had a GORGEOUS bouquet of Fall flowers on my desk, a pumpkin spice latte (my favorite), the most touching card, and a box of yummy snacks!

At first I was super confused, but then I looked at my calendar with a red face of embarrassment and realized it was Boss's Day! WOW! I never expected all of this, but it literally set the tone for an amazing day.

I've been adjusting to being the Nurse Manager for about 3 months now. I've been pretty nervous and unsure of myself, but yesterday made me feel like I was going to be ok. It's hard to have worked with this amazing group of people and then to be in charge of them. In a sense It's wonderful because they are simply the BEST. There is no way I would have accepted this job any other way. They are the ones that make it worth while.

Yesterday this boss had a busy day after work so I had to use my lunch break to hit up the gym. It was nice, no one was there! I did the Elliptical for 15 minutes, and rode the bike for 15 minutes. Kick butt workout for sure!

This weekend is a busy one as our friends are getting married. My legs are happy to have a much needed break I'm sure ;)

Today, CF didn't seem so bad...

Too many times in the Nursing field we have to tell patients bad, or grave news. Does it ever get easier? No, absolutely not. We had a patient today that came in to be evaluated for abdominal pain. As a GI Nurse I expect to see the usual, non life threatening findings post operatively. Not today.

She is only 43 years young, and prior to even starting her IV we got bad news. The radiologist called to tell us her CT scans showed cancer "everywhere." It has taken over her entire abdominal cavity, and beyond. I think it may have been one of the saddest cases we've ever seen.

We brought back the family to talk to them which we do with every patient, as they have just been sedated. She knew before the Doctor even spoke. She cried, her parents cried, we cried...There was nothing we could say. She began to gasp for breath and said "This is treatable right? I want to Live." At that moment our hearts were torn in half for her.

I later spoke privately to her doctor and asked him about her prognosis. He said she probably won't be here in 6 months :( It was today that I got some amazing perspective about my disease, my life, and my care. I think we are still numb from this patient, but if anything I tried to put a positive spin on these events, and thought, you know what sometimes CF isn't so bad.

Today's exercise consisted of 25 minutes of jogging on the treadmill.

"Oh She's an ATHLETE!" you talkin' to me!?

I've had a crazy busy few days, so this is a catch-up exercise blog :) Recently we went to our FAVORITE Fall Festival in Western MD and walked all day long. I really wish I'd had a pedometer, because I'm sure it would have been up there! By the end of the day these legs wanted nothing to do but be lazy.

We also recently went on an amazing hike. We ran into a huge family of deer, saw huge waterfalls, and all the lovely trees changing. It was perfect! That day our total hiking was just under 3 miles. I should add that some of those hills were so steep, I think they were more like mountains ;)

As for the gym the past 2 days I've worked out a little longer than I normally do. No reason really, maybe it's the good tunes on the iPOD (hehe). Anyway I've been doing 25 minutes on the Elliptical, and about 35 on the treadmill. By the end I'm a salty sweaty mess, but that's ok....I had 2 people walk past me the other day and say "Oh She's an Athlete!" Umm, don't mind me as a turn my head and look at you like you are nuts. Are you talkin' to me!? YES they were! (Insert huge cheesey grin here)

PFT's say what!?

Well today was the quarterly Hopkins CF visit that we all love ;) I've been fighting a cold for a bit now, but have been feeling so much better thankfully. I was anxious about PFT's even though If they were down I had a darn good reason for it. Still, I'm a perfectionist, and a worrier, so I was still anxious about it.

Well....*Drum Roll Please* I knocked the PFT's out of the park! Each time they went up significantly. I honestly couldn't believe it. I went up 3% from 3 months ago, and haven't blown #'s that good in 5 years!!!!!!!!!! I haven't blown #'s like that, consistently in almost 10 years!!!

I'm beyond THRILLED right now! I guess the Gym is really paying off, and I couldn't be HAPPIER!!! Here's to some much needed good news!

:)

"I Miss Your Blog"....so much to catch up on!

I feel pretty honored to actually have people like to read my blog and wonder where the heck I've been. Believe me, I haven't not blogged just to be recognized. September was a very hard month in this house, and honestly I just wasn't even sure how to put into words how I felt about things. So on to better things and time to get back to what I like to do...blog!

To sum things up in a nut-shell if you will, my month started off with terrible tragedy. I went over to my parents house to shower because our water system had went up. I walk in the door, and my Father sits me down and said he and Mom had terrible news to tell me. I thought I was going to pass out. My 17 year old cousin who had cerebral palsy passed away in his sleep. To say I was shocked would be the understatement of the year. I can't even explain it. I felt completely numb for days. Our family is in mourning and I still can't even wrap my head around it all to be honest.

I ran another 5K on September 11th. It was respectfully called the "Run to Remember" and it was the most emotional touching races I've ever run. Overall I'm happy with my time and proud of myself. I was on Colistin during the time of the 5K so my chest was tight (side effect) but I still did it, hills and all. What an amazing way to honor our fallen heroes and their families.

We went on a cruise to New England and Canada 2 weeks ago. I can't even begin to explain how WONDERFUL it was to get away!!! There was a slight chill in the air, the leaves were starting to change, and just an overall Fall feeling. This is my favorite time of year, we thoroughly enjoyed it. That reminds me, I really need to post some pics!

My souvenier that I brought back was one I wish I hadn't...a raging sinus/chest cold. I thought I had it by just doing sinus rinses, but turns out I had an ear infectin so the sinus rinses just added to it. Note to those who do sinus rinses, DO NOT use them if you have clogged/blocked ears, or suspect an ear infection. Ouch.

I've been on Levaquin for almost 2 weeks now. I can't complain though, it finally seems to be helping me. This is a stubborn old cold and I want it outta here please. I haven't been on oral abx since January so I'm pretty happy about that.

Aside from the CF stuff, without delving into too much on here, I got diagnosed with stage 4 endometriosis in September as well. It came as a shock to me, but I'm doing my best in taking it all in and making sense of it all...believe me it's hard.

My job has been a major stresser to me. Without sounding like a negative nancy, It's just an adjustment and I need to stay focused and not give up. I need to realize I have to power to make things better and do it. It's been causing me a lot of anxiety which I'm not used to at all, bummer.

Scott is in college working on his 2nd degree after work during the week. It's hard not seeing him all week, but my goodness I am so proud of him, his hard work, dedication, and drive are amazing to me.

I've been working out 4 days a week at the gym and things are going well there. All during the cruise we hit the gym, and the track, so I didn't miss a beat. Infact on the ship I was referred to as an "athlete" I was glowing after I heard that :)

This past weekend we went away for the weekend camping with Scott's family. It was wonderful to be in the woods, outdoors, and be around family that I love all weekend long. I am very fortunate for that.

I decided to take some down time for myself with last months whirlwind things happening. I've always had a MAJOR fascination with JFK and Jackie Kennedy, and well, the whole Kennedy clan since I was about 9 years old or so. I'm reading a great book about them right now, and am hooked to say the least.

I'm sure I forgot things, but that's the gist of it all....

Things aren't awful, I'm not a negative person to harp on things. However, September was rough, and in the words of Green Day..."wake me up when September ends"...