Cheriz: My life with Cystic Fibrosis

Work, Effort, Time, Committment: GOOD NEWS: Princeton, MY HOMETOWN is going to be hosting their first GreatStrides Walk on June 28, 2014!!!!!! I'm so excited to get the community invovled and hope there is a great turnout! SAVE THE DATE! more info posted as I figure out the details. Sign ups coming soon too... Now, in regards to people asking me for my secret on how I got my lung function from 38% to 64%. Nothing shocking, but here is the story: All my life I have done multiple nebulizers every day in order to make sure my lung function stays high. However, I struggle with my lung function and was not always very compliant with meds. During the day I do 3-4 albuteral nebulizers, 2 hypertonic saline 7%, 1 pulmozyme, and 3 caystons (or 2 Tobi). I used to skip the extra albuterals. However, the hours of sleep I get each night, my weight, and the amount of "running around" I do also affect me. I'm not always able to take the time to do all my nebs. Naturally, ...

1 year Since We Started Dating: Yesterday, marked 1 year of Andrew and I dating! He planned a weekend full of suprises and it all started after my  AMAZING Clinic Friday. Clinic: My weight went up to 106 lbs and better yet my lung function went from 45% -64%. I'm so thankful over the years I have been getting back up from my lowest point in 2010 (38%). A lot of fellower CFers have been asking for my secrets. I don't have any secrets, but I can describe my 2 years of work on getting it back up. So over the next few days I will write that blog and have it posted. Now back to the weekend of fun: Saturday: We woke up early, and headed out. Now, picture me with my eyes closed in between each event over the entire weekend. When the car finally stopped, we had to wait a while (with my eyes closed)... Finally I hear a train. " Andrew are we taking a train?" Andrew: "Uh, maybe..." We get out and get closer. I can hear the train has stopped, he is still leadin...

CF Climb, Get Some Motivatin Going and Figuring Out What To Do: So this last month has been crazy, in -out- in- out of the hospital. Glad to be home finally, AGAIN! lol. I'm doing a lot better, just have to take it easy with what I eat for a week. I'm more concered about school/effects on my health:  I'm unsure what this will do to my classes. As of right now, my school is telling me I need to drop 2-3 of my Graduate Classes, and they want to me to go to school part time. Making my degree a 3 year instead of a 2 year program. I'm just not sure If I can give that much time to it. Which sucks, since I'm getting all A's and I love going to class and doing research! I have goals, plans, things I want to do. Being in school for 3 more years is not part of the plan...It is just frustrating, because while I'm in school ( If I'm working too) I struggle medically. Regardless if school is part time or full time, we still have to committ 2 years of working ...

Trip to the ER, Back in the hospital: Saturday was amazing! I loved going out and celebrating the fall weather. Sunday afternoon I started to not feel well and by sunday night I was pretty sure I needed to see a doc. As you may have read in early posts: I had been having antibiotic associated diarrhea (I know, TMI)and not feeling the best. But it happens. So anyway. Saturday Night I noticed my gut was really distended and bloated. All day Sunday it  was the same, very big and bloated. Saturday I was really upset by this. I wanted to wear jeans to the orchard, but I couldn't get any of them on. Plus I have gained over 10 lbs since I bought them... So add the bloated gut on top of that. No way! So I had to wear my black sweatpants to the orchard. And I had a hard time finding a dress to wear out to dinner too, most are slimer fits on me. So I chose a sweater dress. Luckily, it worked. But, I did not feel comfortable. I was starving still from the steriods, so if you read...

First Weekend Home: Fall Fun: This is the first weekend since I've been home from the hospital. Andrew had Fri Night- Sunday afternoon off. So Andrew and I decided to celebrate the fall season! We decided to get our pumpkins, and Andrew even made us an apple pie- It was delicious! ( doesn't that look yummy)  Andrew's Mom had the weekend off, so she came to visit on Saturday. Once Cindi arrived we went to an orchard, got some kettle corn, pumpkin spice, and caramel corn. We got a couple taffy apples too! The orchard was really nice, they had a carnvial, petting zoo, camel and pony rides, a sweets shop, pumpkin patch, corn maze and lots of other stuff. We took a lot of silly photos.... ( Here we are as two peppers, we are some "hot stu ff"-- just kidding) After the Orchard we went out to Dinner with some of our friends. We were celebrating Jake's Birthday :-) We went to Weber Grill!  It was very delicous. And I just had to get our pic by the enormous...

There's No Place Like Home (Yep, I'm Home): I was sooo happy when doc B said I could go home yesterday!  It's great being home and being able to go to class starting on Monday! Who wants to miss out on school, work , social events? Not me. But, being home on IVs makes life a little frustrating too. I find that once I get home, some people assume that I'm all better and can start running around again. Work can sometimes expect me to come back, when clearly I can't ( since I have a needle/IV still in). Here is the main problem: Time! I am expected to keep up with all the meds, treatments, still eat 3 large, high calories meals, 2 sancks. Spend 20 mins walking/exercising (building my strenth, etc). And add classes, homework, my stomach feeding at night, etc. Whew. Its a lot. (pic: I'm hooked up to a Home IV, Doing the vest wrap, and my hypertonic saline, while we watch despicable me) Note: The Vest Wrap is awesome, because it doesn't go over my shoulde...

Exciting News: Even in the Hospital: 3 Exciting things!! Yes, I know. exciting news in the hospital...Nope, I don't get to go home. Not yet. BUT, I'm excited to share some othe GREAT NEWS! First, of all since I was admitted last Thurirsday morning, I have gained weight. 1. because I don't have time to make food and eat at home as much as I need and 2. Who wouldn't devore a meal of roast beef, potatoes, veggies, fruit, and pudding at 6pm then order anothertray with shrimp and rice, and more dessert at 7pm? 1. So as of today I am 107.4 lbs! This is the highest I have been in a very long time. To check out my weight and lung functions changes over the years click here- Clinic-My Health Page! Only, down side...I need to buy new pants and running shorts, none of them fit me...I'm cheap and picky with clothes..so it may take a while. However, I'm sure a trip to Delia's will change my mind. Ps. for some reason Delia's usually fit, when others are t...

Reactions to my Meds: First of all, as you may know, I started really noticing breathing problems early last week and called Doc. I was admitted on Thursday Morning at 6am to the hospital. Thursday, Friday went by okay well other than a few mistakes: read about them here!  However, starting late Friday I started noticing some side effects to the Merrem ( IV -Antibiotic). Also, I'm on Solu-Medrol (IV Steriod) and it has been making my blood sugar go a little crazy. Dr. B came to visit last night and changed the Merrem (which I had never had before, but I'm allergic to Keflex, Levaquin, and Bactrum already, so he was trying to switch up the antibiotics to find a new one...) He ended up putting me on Aztreonam, which I used to go on all the time when I was little, but haven't had it in at least 6 years. So, hopefully that clears up all those issues up. And he lowered my does of Solu-Medrol to half the amount to get my blood sugar more into control. So just waiting to see i...

Blogging increases dramatically during Hospitalizations: Gee, I wonder why that is? oh, yeah...Because we get bored easy. Usually my boyfriend is here with me, but today he not only had school, but work too. So he won't be here until 10pm ish. So what did I do today. Soooo...bored. (pic of Andrew and I from a couple weeks ago)  Today, I did homework and readings for school (I go to Dominican Univsersity for Grad School in Social Work). I love it and luckily, my profs are all pretty cool. One, my favorite prof. (shh! Don't tell), was very concerned. I also, did the usual, watched TV, a movie, walked around my room a couple times (I'm in isolation, so I'm not allowed out.) And then came Internet googling and facebook stalking..But that got boring too. So then I decided to read lots of CF Blogs, meet more CFers, comment on CF pages, etc and focus on networking in the CF Commuinty. It was so nice! I meet some great CFers, read some amazing blogs, gave: advice, and r...

 In the Hospital: Tune Up Time I Every so often as a child I would go in the hospital for a "tune-up." However, I switched to a different doc in May of 2011 and this doc doesn't really believe in "tune-ups" in the same sense my old doc did. My old Doc put me in at least twice a year on meds, even without a big decrease in lung function. My new Doc explained that he doesn't put CFers on antibiotics or IVs unless it is necessary, due to superbugs and growing immunity to them. Plus, I'm allergic to Bactrum, Levaquin, and Keflex and their cousins (3 main antibiotics they use for us). So gotta be careful.  But as you all know, from reading previous blogs, that my lung function has decreased from 61 to 49% since summer of 2012. But last month, it went from 54 - 49%which is quite the drop for two months,especially for me. I'm pretty healthy and stable most the time. Well, in the last couple weeks I noticed walking into to school and even w...

CF Walk and Other Exciting News: Today was the CF Greatstrides Walk in Peoria! I love the Peoria walk, it's on the most beautiful route. On one side is the river and the other side has gorgeous homes! This is my third year at Peoria's Walk! My mom, sister, boyfriend, and my friend Sarah came. We also brought my two babysitting girls and they loved it, expeically the fun extra activities. The walk this year had a photo booth, balloon animals, drum line that played, etc. After the walk we go up in the observation tower to look out over the miles to see all the surrounding cities! We raised $180 between the 5 of us! Thanks to everyone who donated and walked! It was so much fun. I keep thinking about trying to get a CF GreatStrides Walk started in my hometown. Perhaps next year I can make it happen. I'll keep everyone posted about that. Below I listed the walks I typically do/ hope to do next year. Also, I got to meet Colleen and Tim today! Colleen also has CF...

Research: CFers lets help out! I was contacted to help encourage and find participants (CF patients) to take a survey for a Grad Student in South Carolina. Here is what she writes: Hello, My name is Margo Faust and I am currently a second year student in the genetic counseling program at the University of South Carolina School of Medicine. As a part of my Masters’ thesis, I am conducting research on the use of social media by adults with cystic fibrosis as a support network. Like many of you, I use social media in my everyday life and find it to be an integral part of the online community today. I am interested in seeing how adults with CF such as you use social media to gather information and support about CF. I would like to invite you to participate in an online survey about your use of social media. This survey should take around 10-15 minutes to complete. At the end of the survey, you will be given the option to provide your contact information for a follow-u...