Sunday, April 26, 2015

Friends, Health, and Yummy CAKE!

30th Bday Party Bowling for CF:

Thank you to everyone who made this 30th Birthday Party happen! It was sooo much fun and we raised $400 for a great cause! The $400 is going towards Team CF2's Princeton Great Strides Goal! The party was from 7pm and lasted until 10pm. Which was perfect, by 10pm I was exhausted anyway. But it was so worth it. I actually bowled a decent game the first round. I had Andrew bowl my 2nd game though, since I was so tired. I got to spend some time catching up with close friends & seeing some family. Plus, I bowled I the first Ball of the night AND got A STRIKE! That's right me, Miss I-Never-Get-Over-70-If-That!!!! The whole night worked out really well,  I split up the 28 bowlers onto 4 lanes! I had reserved and planned on 30, whew. We had around 10 people who came to visit but didn't bowl and they all still donated $10 or more too. Hope the cake I bought was yummy enough for $10!  lol. But really, it was exactly what I pictured for my 30th and I think everyone had a GREAT Time! Which was the most important part! So huge thank you to everyone who came, donated, sent money, etc. It was a terrific, amazing, fantastic Bday & a huge success for raising money for CF!

Picture: My 30th Birthday Cake (pretty clever huh)

Lately, I've just been trying to get the GI problems figured out with a specialist, keep on top of my health, and build back my endurance (since I get tired walking a few blocks). Also, wedding planning & CF Walk planning has been keeping me busy.

May 4th is my next GI appointment (read about last one Here), which I'm pretty sure is going to result in him saying I need another colonoscopy & an endoscopy (last one was 2013...oh boy). But, I think it isn't the food, but antibiotics that are causing my bathroom issues & colon flare ups. Every single time while I'm on IV or oral antibiotics ( and a month or so afterwards) I have the problems. So I will see what he says and keep ya updated.

I also got tested for Celiacs, Lupus, and a slew of other things, since the only way to diagnosed CF-related Arthritis is through elimination. CFRA is a reactive arthritis so it doesn't always show in bloodwork ,etc. Which makes it tricky to officially diagnose, but Doc B thinks it's important to get it figured out. I was told I had when I was 12, but never "officially" diagnosed or tested for other problems that are similar...He's right, It's interrupting my daily life. My hips will pop out for no reason, my feet swell if I stand on them more than 2 hours, and I move like a 90 year old some days. ( Read about my Arthritis Problems here)

So I'm super excited to figure out all those issues, so I can just get the healthiest possible! Especially since Andrew & I are getting married in August! I want to be my healthiest when I start this chapter in my life!

Other pretty exciting news: I'm getting my wedding dress altered today, I'm putting up CF posters today, and soon it will be the Month of May!!! Did you know  MAY is CF Awareness Month?



And I have a goal for the Month of May! I will be posting 1 post a day on my CF facebook page. Blog posts,, TBT pics, news, research, great strides tips, CF education & facts, etc. AND I want to register at least one WALKER a day for our Team CF2 for the Princeton Walk!

So please let me know if you can walk with us and I can register you! I'm so exicted! I'll keep everyone updated on Doc appointments & Walk info! Again Thanks!

Wednesday, April 22, 2015

Happy Dance

Yay, I'm Pretty Happy! 

You prolly (I always type prolly instead of probably, because that is how I always pronounce it) know that I had my Cystic Fibrosis Clinic today. Well, Doc B hates when I call it clinic (because its impersonal and he is proud of the fact he has a Private Practice for CF), but eh it's clinic in my mind. It's always a really long day when I have my appointment in the morning, since I have to get up at the crack of dawn to get all my morning meds done in time. I woke up at 5am and did my 4 nebulizers & vest. Shopping & lunch always follows doc appointments too... of course ;-)

Pic: So here I am getting ready. 

I was a little nervous since I was in the hospital in January and was on IVs for 3 weeks (read about my Home IVs HERE), then got sick again in February & April and back on antibiotics (oral). I had no clue how my numbers would look. I've been working hard. BUT, with my lung function around 48% in January, 40% in February, then 56% in March, and back down to 50% on my birthday (that's right Doc appt & sick on my 30th bday), I had no CLUE where I would be today.

I've been feeling a lot better, more energy, slowly walking and doing more. So I'm building my endurance back up so I can exercise more. I've been working hard at eating more & keeping on top of all my meds. I've even been doing extra when I feel cruddy or wheezy. So I was hopeful. I wanted to be back to my baseline.

AND I was... I'm back to my average 55% lung function and my weight is even back up to 103 lbs. So I want to keep that up too!!!

Doc is super impressed I'm following up with GI doc to work out my stomach/ intestinal issues. Plus, I'm calling the Rheumatologist again (from 2013) to see how my blood work looks (long story). But, I need to know since my CFRA is getting worse (or whatever it is)!

I'm very much looking forward to this weekend. I'm celebrating my (rescheduled) birthday with some close family & friends ( my party is a mini CF Walk fundraiser). Plus, I'm getting my wedding dress altered and mom & I are doing some wedding errands! I'm putting up the CF Walk flyers around town & doing some CF Walk errands too!

Busy and productive weekend, but it's gonna be a fun one! And today was amazing, not only did I spend a great day with Uncle Brian & my mom, BUT I found out on I'm on the right track healthwise. Like I said in this previous post : it's like Babysteps) and it takes time! But I can do it, if I keep focused.

Doc B talked about new clinical trials I could do too, so I'll update more about that as I get the info!

So everyone do a happy dance, because even though I still have a lot of work ahead of me, I'm heading the right direction!

Oh and HAPPY EARTH DAY
(from a past Geology Major)!