Skip to main content

Updates Galore!

Big News, Big Times, Big Change:

 I had my post hospital Doctor's appointment on April 21st and it went well. I posted a video on my CF
facebook page. My weight is back on track, heading up. Also, my lung function was around 55%, so that's almost my baseline. I got to take my needle out that night. OH BOY!! I loved being needle free! Whoohoo no more IVs!!!!!

In the last week I have been super busy with a few different things. 1. Work. I have a new client AND I had all my post licensing webinars & exams this last week! 2. More CF Foundation Volunteer work. I held a presentation in my home town, where I discussed CF, the different mutations & severity of classes, as well as fundraising for great strides. I talked about the history of the CF foundation, care centers, and more about our local IL CF fundraisers. Overall, it wasn't a big turn out, so I was a little bummed. My hometown has always supported my CF cause, so it was disappointing not to have a good number of people come (even though they RSVPed). That being said, those who did come I think did learn quite a bit and enjoyed it. Plus, more cookies for them. lol

I did record it (but my phone kept stopping, so I had to restart it and it got a little jumpy). However, I will be posting that to Youtube tonight! I have been so busy with work, licensing stuff, plus now is the crunch planning time for the CF Foundation "Suzanna Lee Memorial Golf Outing," one of Peoria's biggest CF Fundraisers of the year! Suzanna went to my clinic growing up and her parents started the event in her memory 15 years ago! So this year is the 15th year, WOW. Way to go!

The BIGGEST update: I got my Colistin!!! Finally! I have had it before (in fact I got it for a month in 2015, and then just a couple months ago in 2016 too). But since March they have been having trouble filling it. So I have that, I believe I will be starting that after this round of Cayston.

Also, in the next 8 days I have TWO great strides walks. So that is beyond exciting. I LOVE going to the walks! Who doesn't want to spend a day walking and talking with good friends, while raising funds for the CFF!

So lots going on, I'm just trying to keep on top of my health too! So far it has been okay, but I know I need to get more active. Going to go for a walk today with my sister (as long as it doesnt rain).

Keep your eye on my Facebook/ YouTube page tonight, the video should be up then!

Labels:

Comments

Post a Comment

Popular posts from this blog

Clinical Trial, lung function test, and Crohn's diease

Clinical Trial, Clinic Today:   Clinical Trial 9am: Today, I went back to Dr. B's office for the clinical trial evaluation and start of trial. My last evaluation was a mess and I was not too happy with it ( Read about the first trial evaluation mess here! ) Luckily, we doubled today with my CF Clinic. It was a long day 9am-2pm in the office. BUT, good news is I'M ON THE TRIAL! It's not a new drug. I'm just doing the two meds like I always have (unless I get the placebo). I love being a part of clinical trials! The thought of helping drugs be approved that can help our health or even get approved by insurance easier! In the past I did a Clinical Trial for enzymes (that was a horrible clinical trial). I had to collect my stool in buckets and mail it to the lab...EW. But, it was to help us digest food better. AND now I'm on Zenpep, which is a fairly new enzyme and it does wonders for me! I did clinical trials also for Pulmozyme and Tobi too! So excited to get involv...
Post a Comment
Read more

How theatre helped me more than you can know!

Theatre and the balance of my life Every person with Cystic Fibrosis has to figure out to balance the medical with the social. For years I had no clue. Currently, I'm in a show Hairspray, its really fun and a show I've always wanted to do. I'm being smart, no matter the time I get home I still do my meds, I still find time to do my jogging/exercise everyday and I eat extra/do extra stomach feeding to make up for calories burned. I've been sharing about my CF with cast members, when I need to and even the director knows. I watch my energy/blood sugar. AND even while doing the show I'm at my highest weight in 10 years and on Thurs at clinic (CF appt) I will find out if my lung function has gone up (hoping for 60%). So no worries..  I learned from my mistakes though. In the past I was stupid. When I was cast in   Urinetown, at the University of Illinois, I kept pushing too much at rehearsal and then even went out with cast members some...
2 comments
Read more

Starved Rock State Park

The fun way to get my exercise   :-) Sarah and I hiked at Starved Rock State Park today! I usually have to work or play practice, errands, or something. But I had nothing planned for this afternoon/evening! I asked Sarah if she wanted to go hiking at Starved Rock. We both are always prepared and packed bags with water, sunblock, and snacks. My bag also contained some bandaids (I'm lil accident prone) and of course my meds and inhaler (which I rarely ever use, even when I'm indeed needing it). We started by first heading into the trails towards Pontiac Canyon, then we walked over to the River Trail and enjoyed the veiw of the River. Once we  were almost to horsehoe bend we had to turn around (where it looks like I made a mistake with the higlighter). Which wasn't a mistake, we started to hear thunder and decided to head back towards the lodge. We had to back track probably .25 miles. But we took the hiking trails past 4 more canyon/spots...
2 comments
Read more