Skip to main content

Vicious Cycles...

A couple awesome and beautiful cylces:

Who doesn't love the four seasons. The Cycle of Life, its a beautiful thing. And of course my favorite the Rock Cycle. Of course since I took 2 years worth of college geology classes I'm always in awe of the rock cycle. Both of these cycle are simply amazing and continue life.


And now some nasty ones:



Cycle #1:
Everyone loves weekends and in some ways I agree... I don't work on weekends and I usually have something planned that’s fun. I deliver mobile meals to the ederly (who are ADORABLE) & teach sunday school to Pre-K kids (who are ADORBLE). With lots of adobrable things on the weekends, what's not to love. Plus I'll take a quick road trip to visit someone, hang out with friends, and have people come visit me. But with weekends comes a huge dose of laziness for me. I tend to skip more meds, get hooked up to my night feeding later, resulting in less calories and less energy the next day, resulting in more laziness… oh the vicious cycle.


 Cycle # 2:
As you may know I have been having trouble getting my Vitamin D levels up. After 2 rounds of 2 weeks each of 50,000 units (1.25 Mg)of Vit. D daily. [Note: Average recommended dose for a person is 600-1,000 Units daily]. I’m taking 50,000 daily (that’s not a typo) for four weeks and it actually went down. However, I’m not too concerned other CFers have this problem and their doctors have found a way to correct it. And Dr. B has a plan. Plan B goes into action if my levels are not up next week. But "Hakuna Matata" - we'll figure out eventually!

 But thought I would share this: I was frustrated at my Vitamin D, so I did what anyone would do and googled it. I went onto every CF site, read a ton of articles, and I came to this conclusion: My Poster of an annoying CF cycle (especially my bone density is decreasing)!






ps. Getting blood tested again Saturday! Now to go jog! :-)


Comments

Popular posts from this blog

End of Summer -Updates!

Wow, I can't believe it's been a year since we moved our blog to www.MoreThanDNA.org! A lot has happened in that year. My husband and I became Foster Parents to some amazing kiddos and still have one of those kiddos living with us. We have loved having "Shoes" with us and can't believe how much he has grown and learned in the year!I'm so proud of him! We have court next week, so prayers that it goes okay (and doesn't get continued again- that just drags it out longer for the kids). He is now 39 months old and starting Pre-K this month! Other big changes include: Some renovation to our home (complete Bath rehab & updated plumbing throughout), I started a new gene-targeting medication (symdeko) that is helping to keep me stable these last 3 months, and I got an AffloVest! I'm loving my new portable vest! Also, career wise...we both switched jobs! Andrew also started Seminary this summer to get a Masters Degree in Divinity. He has always wanted to be ...

Why I Hope this Hospital Stay is Different

Typically, I've been very stable as an adult. I'm very lucky for that stability. However, 2018 started out nowhere near where I wanted. I was admitted mid March for a virus. We aren't sure what virus I had (every test came back negative). However, I had a consistent fever over 102 the entire 5 days I was in the hospital. Once I was fever free for 24 hours and I started eating better, they let me return home. I was excited to leave and get back to my everyday life. But, considering now a month later (and re-admitted), I think I should of just done a two week tune-up last month while I was in already. Live and learn. As you know (I'm sure) I have been trying to get my lung function back up to around 55-60%. 60% is my goal and it really is the highest my lung function can get, due to all the permanent scarring. I started Orkambi in October 2016. At that time it was the newest gene-modifier drug on market for CF patients (with my mutations).  After going on Orkambi I droppe...

LOTS, LOTS, LOTS to Tell!

Doing What I Can: People can tell me " Wow, how do you keep up with all that" (referring to all my meds). Sometimes people tell me "That's so awesome that you are doing all that".... Well, I guess, but not really. I just do what the doctors tell me, I know its the best chance I have to living a longer fuller and better quality of life. Plus I have lot of help from Andrew, family, and friends! Right now the main thing I'm working on is: 1. Keeping my lungs at 56% (since my last appointment ) AND 2. following the dietary restrictions the GI specialist gave me (read about that appt here ) & I'm keeping my Food Journal for him to look at. Here's how that is going: Okay...  For the last 7 days I've had no meat in my diet. I really miss my meat and to be honest it didn't help a lot. This week starting today I'm no dairy for 7 days. Then I'm no meat and dairy... Then no gluten for a week. I go back to the specialist in 5 weeks. I...