Cheriz: My life with Cystic Fibrosis

Mornings come to early. The things about mornings that drives me nuts, is it is the one single thing about CF I dislike the most. I don't mind CF most of the time. But in mornings....ugh. A night, when I'm doing therapies, I'm already getting ready for bed/in bed and I can read, do homework, etc. Not as big of a deal. But knowing when my alarm goes off at 5 or 5:30 am, just because I have an  hours worth of treatments to do, its gets old. Its not much a of a motivation to get up on time. Which is where I run into trouble. I will tell myself, "well If I didn't have to do therapies or have CF, I could of slept another hour, probably two (do to losing one during the treatmensts before beds). Then I roll over and will sleep through my morning meds. Ruh Roh, alarm goes off again. I jump out of bed. "CRAP!" I grab my therapy machine and end up only doing two of my 4 nebulizers most mornings (plus I skip my vest) and I'm doing them while blow drying ...

And All that Jaaaaaazzzzzz... It's getting close to my appointment with the Rheumatologist! Very excited to get this figured out and find the right meds! Also, right now I'm on anitbiotics ( not IV, just oral) and prednisone. My lungs have been pretty crappy lately, so hopefully this round of meds will boost them back up! My weight has been going up though, since my Boyfriend has been cooking me a lot of meals lately (ps. he is amazing cook)! Sure beats my grab a granola bar on the go meals. Also, good news! I got a new vest, foot pump, and tubes (not a new machine)... Bummer, but at least I got it fixed, so I can use it again! I got the purple vest (my favorite color)! And the cool thing is the new vests are washable! (Picture of: Me in my new purple vest, the old honking machine w/new parts, plus a picture I need to hang, a shoe rack I need to out together, and a black dress that is currently drying...haha sorry bout the mess! )The new machine would have been nice, its ...

Happy 1 year Blog and Chicago! Today is the mark of one full year of blogging! I started my blogging on Feb 12, 2012.  I was told I should share my experiences about living with CF with others, and there it started. To learn about me, read my summary on my life/ Cf/ Med problems Click HERE   and to read my first few blog entries Click HERE! I hope everyone has loved reading and being a part of my blog. As of Today I have had over 7,765 visits on my site in the past year. My first few blogs averaged 15- 20 views per entry. Now I range between 60-80 views per blog. I'm pretty happy that it seems people have enjoyed reading. As long as people continue to follow my blog, I will continue writing! Chicago This past weekend my boyfriend and I went to Chicago. On Saturday we got up there in the early evening and hung out with a couple friends. Then we went to dinner at The Signature Room (95th Floor of the Hancock Building). It was amazing, the food, the company, and the veiw...

Chicago Weekend: I requested off from both my jobs, I don't have any play practices, etc; And I'm going to Chicago this weekend! I've been looking forward to the trip ever since Christmas! It was part the of the Christmas present Andrew gave me! I even got to sleep until 9:00am this morning! Now, I'm just doing my meds and packing my bag for Chicago. I've been doing as much as I can medically since my Clinic Thurs. I was so disappointed in myself. I can't afford to let my numbers drop like that. Not if I want them to increase more. Things I need to start doing EVERYDAY: 10 nebulizers 1 hour of my vest (once I get my new one) eat at least 2,500 calories sleep at least 6 hours take all my pills do my inhalers exercise/lift/jog (at least one of them) take at least 1,050 calories through my stomach feeding at night. If I can fit this into my schedule everyday, then I will be doing awesome! If I stick to this, then I can have a rewarding clinic on May ...

Weight and Lung Function: I can't start off by making a bunch of excuses. Bottomline: I have been doing my meds, but not eating very much. So today at Clinic I saw effect of my slacking. My lung function is now down to 56% and my weight is at 93lbs. Just last fall I was st 61% lung function and weight 107 lbs. Frustrating. I'm disappointed. I could of tried harder, ate more, done more meds. However, Dr. B understood, he laid down the law. I told him that sometimes I don't have time to eat, he asked me if I shower everyday. I said "Yes" He goes "Why? you make it a priority. Eating is the same category." Point for Dr. B. We discussed my spots/hives and legs swelling. T hey have been coming and going since July.  Sometimes they don't hurt very much, and other times all my joints hurt.  Dr. B definetly thinks it CF-related Arthritis. Which I have been getting flare ups of since I was 12. since they have been getting worse in the last year or ...

An Update: I have my next CF Clinic this Thursday! Yipes, I'm a lil concerned. I didn't have my therapies for a week, so I'm gonna have to work really hard the next 4 days to get my lungs in better shape. Also, weight wise, not what I was hoping for. But otherwise, I'm doing good! Its sooo weird how fast I can drop weight. Seriously, a couple days ago while weighing myself at mom's I weighed 98 lbs. I need to get back up to 107 again (dr. B wants 115). However, today this is my weight: Not sure how I dropped so much, especially since yesterday I had breakfast, lunch, steak n shake last night (with some friends) And I even hung out with a friend and had a couple beers last night. I didn't jog, or do any dance practices, just work, and went saw a show. Calorie wise, I shouldn't have lost any weight yesterday. [side note: I don't drink much or often, but I did start drinking in 2012, when my dr. gave me the "green light" and said it is ok...