Cheriz: My life with Cystic Fibrosis

VACATION YAY! Tomorrow I head to my uncles' and stay there, then Thursday morning, EARLY in the morning, we are headed to the airport! We are flying into Buffalo, NY and spending Thursday at Niagara Falls! Friday and Saturday I have no clue what we are doing! I know there is a surprise for me. But I'm not sure what it is. All I know is I'm soo excited to go! Last Fall I went to Las Vegas with my friend Amanda! It was soo much fun and had been like decade..seriously 10+ years...since I had been on vacation (well more than wknd trips to see friends who live within a 10 hr drive, hee hee Kym!) When I get back from my trip this weekend, I will post about it too! I just have to pack a little more when I go places and make sure to do my meds. On top of the regular, clothes, etc that most people pack  I will also pack: therapy machine 5 nebulizer cups  28 vials of medicine for my nebulizers over 150 pills I will take during the wknd 16 cans of stomach...

The daily life in the hospital! Most people cringe at the idea of a hospital. However, when I was little I never minded going into the hospital. I usually would have at least one other friend with Cystic Fibrosis to hang out with there (before we knew about the "CF Bugs"). I didn't love being sick, but I loved my CF friends that I would hang out with. Also the hospital, nurses, and my parent's tried to make it a "normal" environment. I got up and put on cute clothes, "walked to school", flirted with a couple CF boys, did homework, came "home" (back to my room), my friends would ask my parent if I could go play with them. We'd hang out in the play room or go on a walk with one of my parents! My dad loved taking me on walks and I LOVED going on our walks! Here is a video blog of the route we took and bit of information on what is was like growing up (for a chunks at a time) in the hospital! (it is posted via youtube, let is dow...

  CF and Laughing Cystic Fibrosis can bring sad times and times of tears (like losing a close friend with CF, etc) BUT, it can bring so much joy and love. I've noticed most people love to talk about the people they meet while traveling. This is usually, because they have learned something from the person. Or the person is considered unique to them. I can do the same thanks to my Cystic Fibrosis. I may not have traveled much in my life thus far, but I have learned mountains of lessons from my CF. [Picture right:  Me ready for surgery in 2nd grade!] Forgive my shoutouts (but I must recognize a few amazing people) I have met some of the most amazing doctors: Chatrath, Dr. B Nurses: Sara & Marie (from Clinic), Lizzard, Melody (best IV stick ever), Deb, and Kris (you know a nurse is amazing if you love her after putting tubes down your nose!) Respitory Therapists: Jeannette, Lanell, and Don (you da Man) And Cookie Marrow (Musical Therapist- She would sing to me a...

Fitting CF into my life: Cystic Fibrosis won't be hard to fit into my schedule right now. As I just finished my job watching my babysitting kids for the year. I'm currently job hunting and taking classes on Mondays at the local community college (as a pre-req for Grad programs/and for fun). Mulan Jr, just ended today. We had two shows. Back-to-back performances are harder, since I had a busy day before the shows, I didn't get a chance to do my meds before the shows. Therefore, I end up bringing my therapy machine along.  Yep, sitting in the light booth and doing my meds, while watching people take their seats. [Note: I turned my therapy machine off when the house lights had to go out.] Its not that hard to fit them in. You just have to be willing to do them sometimes in unexpected places and be willing to have others find out about it. I had two people in the light booth with me, neither knew I had Cystic Fibrosis, but neither were bothered by the nebs. So bottom line...

Jobs and Cystic Fibrosis Many Cfers and doctors have different opinions on jobs that a CFer can or can't do. Well... shouldn't do. I hate the idea of being limited in jobs, or at all. I know when I was working in DayCare all last year, my doctor wasn't too thrilled. Apparently, I can't work around cleaning products, chemicals, outdoors, in schools, in daycares,  or do heavy lifting, etc. The not working outdoors, teaching, or working in labs with chemicals, kind of killed the idea of Geology. I have over 40 hours of credit in Geology and won't use it for a career, just a hobby. Sad. Hmmm..so after listening to jobs my doctors have told me to avoid I come up with...desk job. UGH. no offense to those who do work at a a desk job. If you enjoy it then that is great. But, I have way to much energy to sit at a desk all day. I want to be up and about,working with people. I've been thinking about jobs a lot lately, Grad School Programs, etc. I'm still ap...

First 5K is scheduled As you all know, I couldn't run in the 5K a couple weeks ago. I had a severe flare up of my "mummy disease." Dr. B is going to run a bunch of tests next time to see if it is a type of CFRA (Cystic Fibrosis related Arthritis). Side Note: Apparently, CF thinks it is sooo special, it not only gives us secondary problems like Diabetes, Arthritis, Osteoperosis, BUT None of them are the normal type of condition, they are called CF-related "Arthritis, etc." Which means our Diabetes, etc doesn't act exactly like a common diagnosis of Diabetes. Go figure. BUT I'm doing a 5K on September 8th! Yep, a month away! yipes! I better get jogging. I wasn't able to for the last 2.5 weeks do to not being able to move very well. But that is changing now! This weekend I will start jogging again. I need to do it more without headphones. Headphones aren't allowed on the route. Which means I will hear myself breathing heavy, wheezing, gasping...

"Mixed Up" Monday Yesterday, was a day full of random stuff. Random GOOD stuff, but still. I had no car, as it is still dead in my Garage (but it's getting looked at tonight). I spent the morning hanging out with my lil cousin, then had lunch with my friend, Sarah. I finished the outline for my headboard, so it could be cut out. I then just have to paint it and attach it (a project I started over a month ago..lol). I did my meds and went to Tech rehearsal. I'm doing spotlight for Mulan Jr. Which I have never done before. I have worked with running the lightboard once, when I was in high school. But first time ever doing spotlight. Earlier in the day, after I styled my hair for the day, I realized how boring it was to do my hair. Don't get me wrong, I LOVE my short hair. Short hair looks better on me, but as you may know I never get the same hair style or cut twice. I get bored and like changing it up. With it being short, I can't braid it or anything. I n...

CF Clinic Results & The Day with Ryan! My day started off a little rough. My car wouldn't start. Its in my garage completely dead. I had to call my sister and take her car to clinic. I picked up Ryan and we headed off. We decided to eat first. We ate at Yardhouse, which is one of my two favorite restaurants in the area AND we happened to get very lucky while there! There was a Art festival going on in that shopping district. We got to see all the art and then go to my appointment. Okay, I will get to the numbers!!! Well, my weight did go down from my last clinic. But I knew that was going to happen. It was 104 today and was 107 last time (1.5 months ago). However, he gave me scripts and orders for a new medicine for my "mummy disease" and wants me to get blood work done next time it happens, so we can see what is going on exactly. I also have an appointment for my mediport to be flushed with TPA and a consult for my G-tube to get a different size put in. So proble...

My History: My Docs and  My Clinics! When I was born, I was the luckiest baby ever! Or that is how I feel. You may think I'm joking since I was 10 weeks premature, life flighted to Peoria, and spent the first 4.5 months of my life in the hospital. But I do feel like lucky. Yes, I was born with gangrene in my intestines, and would later find out I had Cystic Fibrosis, a seizure disorder, Cerebral Palsy, and lots of allergies; However, I was given the best doctor in the world! Dr. Umesh Chatrath, seriously he was always positive, worked very hard to keep me healthy and truley loved us CFers! I wasn't nervous, scared, or upset to go to Clinic. I loved Clinic! He never made me feel I had done anything wrong. I was just was having difficulties and would have to give even more effort. I had him until early 20s (he is a pediatrician). However, there at 3 times in my life I know without his expert opinion and continuous working to make me better I most lik...

Sleepover & Clinic is soon! Every summer my cousin Kazia (now 13yrs old) comes to stay with my mom for a week or two. And usually I will have Kazia stay the night a couple times at my apt. Kazia stayed at my house the last two nights. The first night we just ate pizza, watched a movice, and fell asleep early. ( Picture of Hot n Cold Makeover-which while she was writting H and C on my face, It felt like H and O...I was glad to see it wasn't.lol) But last night we rented some movies, did makeovers, and ate junk food, all while I was hooked up to my stomach feeding. It reminded me of when I used to stay at Aunt Karla's (Kazia's Mom's) house in the summer. I grew up very close to Kazia's sister, Devahn. Devahn and I were always spending summer at each other's place. We are tight as cousins can be. We spent a lot of time hanging out with a couple older cousins too, mostly Patricia and Mary. Some of Patricia and I's outings are hilarious, but that's ...

My Mummy Disease Update: My ankles are sore, but otherwise It's almost gone! I have two big spots left on my feet, but otherwise the spots have cleared up. I can't decide if I want them to stay away for good, or (this sounds bad) hope they come back next weekend, since I have CF clinic on Saturday! If they did come back Dr. B could see them in person. But, I don't want to deal with them anymore...ugh. I had them July 19-21st ish, then they disappeared. Re-appeared at night on the 28th, disappeared the next day and re-appeared Friday, August 3rd. Why won't they go away for good! I'm sorry to everyone I missed this weekend. However, the weekend turned out better than I thought, my parents drove me to my sister's apt in Peoria today. So I got to see where she lives,etc. I'm very proud of her, she worked very hard in school at Augustana (Music Ed Major- Majoring in both Choir and Band, K-12 certified) and it paid off. After sending out only 5 job applica...

My 5K I paid my registartion fee weeks ago, have been training and I'm ready for the 5K. However, I didn't get to run my 5K today. Why? Because Cystic Fibrosis decided to one up me. I got my spots back friday, and they just got worse and worse. They look like this: They take over my feet, and sometimes my calves. I posted about this a few weeks ago. I had them during the last few performances of Hairspray. I call it the "Mummy disease" because when it happens my joints freeze up and I can't move. So the morning of my 5K I wake up and they are on my thighs...     and on my arms. This is the worst they have been in years. I took pictures to show Dr. B at my clinic on the 11th.  I'm just really bummed and upset about my weekend! I was supposed to run my first 5K!!!!! I then had a bags tournament in Peoria for the Dream Factory, and was then going to head to Champaign for Sat night- Monday! My friend Alex, reserved me a ticket for Ren...

Balance: It's an issue I have a bit of a balance issue and I'm accident prone. I'd like to blame it all on my Cerebral Palsy, but that's not always the case. I get distracted easily and stuff happens. Tonight, my parents invited me over to watch Olympics with them and my sister. I had already hooked up to my stomach feeding. So I took my pump and feeding bag (with formula in it) with me. I brought the cord incase the battery got low and headed out. I get to Mom and Dad's, walk in and Ada has laundy out. She is folding it and putting it away. I set the pump on the coffee table, and proceed to step over the laundry baskets... FAIL. I end up tripping and as I trip my stomach tube cord gets caught. It yanks &  hurts and I freaked, my first thought was stomach tube is going to yank out. So I put both hands on my stomach tube and just start to face plant.. However, my dad happens to be sitting next to where I was headed on the couch and I end up diving into him. ...