Cheriz: My life with Cystic Fibrosis

I turned 34 in April this year! I love celebrating my birthday each year and seeing more wrinkles and gray hair appear. I LOVE that I am building this beautiful life with my family. I just wish my body could keep up... Being born with cystic fibrosis meant some challenges throughout my life. I never knew when CF would throw me a curve ball. I missed a lot of holidays in the hospital growing up and sometimes my body tells me to stop. The last few months have been more rough for my CF-related Arthritis. And today isn't any different, despite it being Father's Day! Dad & Andrew I had wonderful plans to go home to see my Dad today, then come back home in time to make some dinner for my family when Andrew gets off work around 5 or 6pm tonight. I had a lot of great plans to celebrate my husband and Dad for Father's Day- They deserve it. But, I woke up with frozen/stiff joints and spots all over. I can barely move, let alone walk or drive today. So all those plans went out the...

Yes, I have Cystic Fibrosis. Yes, It's mostly known for the damage done to our lungs. But, it's not JUST a LUNG DISEASE. To be honest, when I was younger I had more serious GI (stomach) issues than serious lung issues. I've had many, many surgeries where part of my intestines were removed (I only have 60-70% of my intestines left). I have/had liver struggles, bone/joint issues, reproductive issues, and more. Also, I have mild cerebral palsy ( diagnosed at age 3). For my CP, I did lots of physical therapy, wore a leg brace for 10+ years, and see an eye specialist. I had surgery on both my eyes to cut and tightened my eye muscles a couple years ago. So, yes... while overall I struggle the most with my lungs, it changes day- to-day. Some days I do my meds and have no issues. Some days I have stomach issues, some days my joints hurt, sometimes my allergies are causing me to cough a lot. It just depends. One issue I have never "officially" had diagnosed is my Arthri...

My Body is Older than My Age: I may be only turning 30 years old on Monday, but I certainly feel like I'm turning 90 instead. Why? well, lots of components affect how my body feels. Whether I'm fighting a little infection (which is quite often) to when I'm run down, and especially when my CF-related arthritis is flaring up. Which it has lately. I have better days, then I have bad arthritis days. Luckily, it wasn't too bad on Monday. Mom, Ada (my sister), and I went shopping in Schaumburg. We had scheduled this planning trip at Christmas, it was a day to treat Mom w/ lunch & shopping with her girls.  We took her to Pilot Pete's Restaurant. It's got a aviator  feel, since its in a private airport. The back wall at the restaurant is full of large windows, so you can watch 2 person planes take off and land while your eating. We saw a couple take off and land. Plus, the food was delicious & large portions. YUM! In the lobby area: they had these fun a...

Bummer, Man: So, I just got a treadmill (thanks to some awesome family I have) and I really, REALLY want to get started on my jogging. However, dun dun dun... Guess what is back. My CF- related Arthritis/ or whatever it is. I don't think this is CF Arthritis anymore... Dr. B wants me to gets some tests done and see a Rheumatologist, to see if it is Arthritis related. I have no clue though. Here is a link to an article about CF-Related Arthitis : HERE The past few days I have been sore, but yesterday, I woke up and I felt stiff and it hurt to move a lot. By the time I got off work I could barely move. I got rides to AppleBees (to turn in paperwork for my 2nd job) and by dinner time it was fading in and out how much it hurt. I hung out with some friends last night and it wasn't too bad. However, when I woke up I had the hives/spots on my legs and arms, and it hurt to move. At work, I was scheduled as a Host, but ended up serving too, because we were short staffed and go...

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...

I'm not a Mummy anymore! A couple posts ago I discussed how once in a while my joint gets so stiff I feel like a mummy (like I had been wrapped up so tight I can't move). Last night, the spots on my legs reached there worst point (in the last 4 days). However, I saw Dark Knight Rises and then had people over at my house, so I basically sat around most of the time (which is good). The spots started to go away around midnight and by 4am (when I woke up briefly) they were gone. I decided to get a bit of jogging in, incase they came back. I did a mile, then slept again. I, off and on, napped and did website work all day. I slept so much today that now I'm awake at 11:30pm. However, after I blog this I'm going to try and sleep, so I can get back to my regular routine. I'm so glad that I can move again. My CF-related Arthritis makes CF hard to fight. When I can't move, I'm more prone to skipping meds, not getting up to eat, not jogging, and most nights fail ...

Good and Bad. I love doing Hairspray and because of the Casts openess and acceptance of me doing neb treatments in front of them, I 've been staying way healthier than I usually do during plays. So no clue why this happens to me once in a while, but I kinda noticed how my legs were sore all day yesterday. Then as the night progressed I was even more sore. I kept thinking, oh its just from all the dancing. So between, being sore and finding out my good friend, Laura (with CF) is back in the hospital, I wasn't as cheery as normal. BUT, the Cast of Hairspray always knows how to put a smile on my face and I still had a FANTASTIC time last night. Sore from dancing, I wish. Nope. I woke up this morning barely able to move. I feel like a Mummy when this happens to me!! I also tend to get a fever and pink spots and swelling in my legs (as it gets worse). This happens to me once in a while. I will be so sore that moving makes me cringe or cry. When I was ...