Cheriz: My life with Cystic Fibrosis

Craziness  My surgery got cancelled. My Dr. didn't clear me for it. Bummerz So I'm gonna have to push it back til summer. I can't afford  to miss another two weeks of classes and work right now anyway.  I would have loved to get it done with. And my waitressing and dancing in the play will make it worse over time. So that's :-( But it will be fine until classes are over and then I will try scheduling it again. Plus side: My sister will be home in the summer, so she can stay with me if I need her to.up having a Planet of the Apes Marathon is awesome! She is a Music Teacher at a private Catholic School and teaches Elementary Music PreK- 8th, Choir and Band!  Side Note: I won't miss classes, or more rehearsals. If I had it this week I prolly would still be not 100% by my birthday. AND I have more time to get my weight and lung function up before then.   OTHER craziness: I've been having more of my seizure things. I  have two types: 1. sometimes I'm ju

Ok, let's do this: So as you all know, I'm happily home from the hospital! I was very VERY excited to get to come home. :-) Nothing better than being in my own house again! Having my own bed, food, and SHOWER! I've been doing pretty good. Today, I was a lil tired, shaky, and had a tiny fever this evening. But that is probably from doing too much. I'm not working yet, but I went to my classes, and I'm trying to get my errands/ house stuff done. So overall, it has been going really well. My mouth is completely healed, my finger (that got the virus in it), is getting better. It reminds me of Dumbledore's hand...LOL. So life seems to be falling back into place :-) But... apparently, the surgery that had to be cancelled due to my getting sick has been rescheduled for this coming Tues. Which means I can't get sick between now and then!! To be honest, I wanted to put it off til May. I was hoping to not miss classes and be able to go back to work. Let's fa

Home from the Hospital As you read in my last blog, some craziness happened, I got really sick and had to cancel my surgery. Which means I will be rescheduling that for May! I got a virus, which covered the inside of my mouth and throat in sores. Then I got Thrush, which covered my tongue... And then I got a sinus infection. I got transfered to a hospital in Chicago and have been camping out there over my spring break! BUT... I'm home!!!!!! I have had no fever for a few days, my sores are gone, my tongue finally looks human again. Although, It was kinda cool looking, I could have been some strange alien on star trek :-) I'm soooo glad to be home. But, now comes the "at home adjusting"; where I have to clean my house, cuz its a mess from me being sick. I have to de-bug my house so I don't get sick again, I gotta remember to take all the new meds they put me on, as well as my old. And make sure I have time to do my nebulizers and stomach feeding, etc. Also, I

Surgery got cancelled, I sick... I know great timing right? Thursday night we had our dress rehearsal for the play I was supposed to be in...  I was a pregnant, bossy, loud wife in the play (haha: picture to left) .  I had a 103 fever when I got home. Friday Morning my throat and mouth hurt and I was extremely tired. I went to the doctor and they did strep and mono tests. Later found out they were negative. The Doctor at Perry Memorial Hospital said to rest, get fluids, and gave me an anitbiotic. So by Saturday night I'm still at 103 fever, I'm feeling way worse. I had NO energy. Literally, at one point walking from the back of my apt to the living room, Andrew had to scoop me up and carry me. (ps. He stayed with me from Thurs Night-Today -Tues taking care of me, I'm one lucky lady) Well, Satuday night I start to have pain my mouth and throat (And they looked horrible). I had spots/lesions all over, like ewwwww... I'm beyond dehydrated at this point since I had

One more week! I've had many surgeries throughout my life ( 14 ish I believe). Most due to intestinal twisting and complications. I've had a couple mediports ( a disc, that is an automatic IV Line in my chest), stomach tube, etc. Not a big deal, right? Just another surgery. Here is an article about the surgery they are doing on me too: Read It Here!  - Double Inguinal Hernia Repair. Not a big deal, Right... totally. I have an amazing surgeon, who is VERY talented and really cares about the patients.. unlike the last guy I went to see about this problem. I knew I needed a new mesh put in, I could tell the hernia (both sides of my groan) repairs both needed to be fixed.  The last surgeon, said I was too much of a "risk" and thought I should just "take it easy, stop dancing, etc" .... HA HA HA. no way. That's ridiculous. I blogged about him and his "amazing" bed side manner in T his Blog! I'm sooo thankful to have this new surgeon! I

Help Us Find A Cure & Thank you! Lots of new meds and treatments are being researched thanks to the CF Foundation and the people who support it! Thank you soooo much everyone for supporting me and the CF GreatStrides Walks! I hope you enjoy hearing about the cool new ways steps are being taken towards finding a cure for CF and how everyone has helped me and us (the cf community)! New Treatments And Break Throughs: As you may know, from reading my last couple blogs. Some exciting news was released!  VX-809 + Kayldeco Phase 3 (6 month clinical trials) has started! Which means if all goes well, this could be on the market in the next year or two. This drug helps target the actual faulty gene. It will help improve our lung function (hopefully gain some back, the part that isn't damaged) and will help us to slow the decline of our lungs health tremendously! This is the treatment for my mutations!To read more about this new treatment click Here! Also, there are other medicine a

Rashes, Scrapes The Play, and Got Some GOOD News Today: My days have been soo random and roller coaster-ish lately. Which is fine, it keeps life interesting, and have ups and downs everyday is a lot better than just having plain ol bad days. But for example the other night, I aced my exam (good), enjoyed play practice, found our a friend was admitted for CF problems, and I started having my allergic reaction to the med I'm on. This was within a couple hours of each other. It was crazy. And today, I worked at both jobs and made pretty good tips! Which was awesome. However, I do look like a weirdo cuz i have a rash that keeps appearing. Which I think I have figured out what I'm allergic to, I started a couple new pills 2 weeks ago, so Dr. B and I will discuss it Monday over the phone and all will be well.. (my legs were pure spots/rash, sorry bad picture!) And I lost my balance tonight and  I fell stepping down into my garage (2 steps, yep, lame). Landed with the step

2 Birds, 1 Stone: What a horrible saying, killing 2 birds with one stone. Would take some talent, but still horrible all the same. However, that is what I'm doing today! I have my pre-surgical docctors appt this morning at 9:30am in Hoffman Estates, and then I have my specialist appt for my Cystic Fibrosis Arthritis this afternoon in chicago too. I'm very excited about the 2nd one. CFRA has been bothering me a lot more lately and it drives me crazy when it intereferes with my jobs or plays rehearsals. There isn't a lot of information on it. I posted a couple articles in a couple posts a couple weeks ago. Its like CF-related Diabetes. It not type 1, its not type 2, its a new, thrid, mutated type! If you think about it, CFers definetly have enough weird mutations, that we make some awesome X-Men! Also about the CF Mutations... As you may know, there are thousands of different mutations that can lead to CF! As research is being done, some new drugs are being targeted to