Having CF Stinks, but that doesn't stop me! I'll share with you a little about myself, my life with Cystic Fibrosis and anything else that crosses my mind. Thanks for visiting!
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So, June has been a busy month so far. We started off with our trip to Vegas (which I wrote about previously), then the following weekend we went to Savannah with some friends to celebrate another birthday - Bryan turned 30! We walked along River Street a few times, making sure to stop in both candy shops each time (yummy) and then we took a cooking class which was very fun. It had 3 main courses (it was a backyard BBQ theme): BBQ salmon; BBQ ribs & BBQ sausage with potatoe salad and baked beans; then BBQ chicken with cole slaw and fresh green beans; and for dessert - watermelon. Needless to say, it felt like we were going to explode when we left!
On River Street
With Chef Joe Randall
Whitney & Me
I finished my Cayston the Saturday morning when we were in Savannah. It was strange as I experienced some chest tightness/discomfort Friday night. I think it was due to not using the Ventolin beforehand on my Friday treatments. I admit it, I got lazy and figured it would be OK to skip it...guess I was wrong. I actually was up most of the night Friday because it hurt to take a deep breath. Lesson learned: take a puff of Ventolin EVERY time!!
Then this past weekend, we were in Pittsburgh for Father's Day. Also, we went to the Taylor Swift concert which was fabulous. Although, it did make me feel old that I was at a concert and the performer was younger than me - crazy!
Me with my dad & sisters
Also, my dad's gang just got a new Great Dane puppy - Winnie...isn't she adorable! She's gonna be HUGE!
Only 12 weeks old here
Unfortunately with all our traveling, I haven't been able to ride my bike in what feels like forever! I think its been about 5 weeks. Shame, shame. However, I'm still making Zumba at least once a week thankfully. I wanted to get a bike ride in the morning, but overslept. Oh well!
Well, here is the long awaited official review of my new SmartVest SQL. I don't have any current or updated vests to compare this too, so my feed back is based upon what I like/dislike versus the old and out-dated vest.
Pros: Weight - it is MUCH lighter than my ancient Hilrom Vest. By all means, it isn't light but definitely a great improvement from my older model. I can at least carry it myself!Comfort of vest - the fabric is much softer and less scratchy when wearing it.Technology - it has a digital screen, so I can set the time and know for sure how long I'm using it (the old one had a knob to turn). Also, I can set different programs based on how long I want to use it, etc. It's quieter!! Will still doesn't enjoy watching TV with me while I vest, but I don't have to turn the TV to its max volume! And, the dogs aren't scared of this one as much!There is only 1 hose...so I'm not tangled up :)And it comes with a rolling case (that looks like a re…
I had the pleasure of going to my quarterly CF appointment on Tuesday. It was originally scheduled for 11/15 but being that my sinus funk is still lingering around, I wanted to move it up a bit. (the original funk started here)
I finished my round of Cipro on 10/29. And still had a head full of congestion, sore throat and ears. Bummer. I thought I was starting to feel better for a split second, but it didn't last. Thankfully, my lungs were still feeling good :) We were at our cabin in WV that weekend and I skipped my vest and HTS, but thankfully didn't suffer.
So, I headed in to the doc on Tuesday. My PFTs are holding stable so that makes me happy! More on that in a minute. During my exam, she could see there was still fluid in my ears along with my red throat. Plus my face was super puffy and my eyes felt as if they were going to pop out of my head.
So, the plan of attack is this:
1) Take Levaquin 750mg for 14 days
2) Get back on my Claritin dail…
Having Cystic Fibrosis is not something that consciously crosses my mind on a daily basis. I take pills and do breathing treatments throughout my day, but I just do them out of habit. I don't sit down to eat a meal and say, "oh, I have CF, I better take my enzymes". Instead, I just subconsciously walk to the cabinet and pull out the bottle, or if I'm out to eat, I reach in my purse and grab them. It's just like brushing my teeth before bed every night.
While I know I have a disease that is incurable. I find myself just living life and doing the many things that I want to do. While this seems well and good, it's also unfair. There are other CFers fighting for their last breath, waiting for a second chance at life with a lung transplant, or being hooked up to an oxygen tank and dragging it with them wherever they go.
I often tell people that I am a bad example of CF. When explaining CF to someone, I talk about the deterioration of the lungs, challenge…