LONG Day!

Here's a (long) play-by-play of my visit to the University of Chicago today....well, it actually started yesterday. (Scroll down to the bottom for a very shortened version)

I know I add a traffic picture to a lot of my clinic posts,
but I forget how much I strongly dislike
going-in-the-city-expressway traffic.

Yesterday, after work I set up everything for the sub today, went home, packed my car with all of my crap for an overnight & clinic visit (treatments, medical records, snacks, change of clothes, etc) and headed to my parents' house around 5pm. I arrived at their house around 7:30, ate dinner, chatted with my parents, did my treatments, took a shower and went to bed, only to be up by 5:15am to do my treatments and eat again. Thankfully, my parents house is much closer to the hospital (only about 45 minutes without traffic) so I left their house around 7:15 for my appointment at 9.
I got to the hospital around 8:30 and went to the Endocrinology wing. Surprisingly they got me in a room before 9, but don't get too excited, because of course I didn't see the doctor until almost 10. This was the first time meeting this Endo. and he was wonderful! He listened to me (which didn't happen the last time I saw an Endo.) and I learned a lot from what he explained to me. Basically, since I retested on Monday and the test was pretty much normal, I'm still not considered CFRD (yay!). I'm still borderline. Also, since I've been testing my blood sugars for the past couple weeks, we noticed that I've had a few low sugar times - mostly between breakfast and lunch when I can't fit a snack in at work- so he said he wants me to work on controlling the lows before we address the highs (which I don't have a lot of at all).
My next steps include adding more high-protein, high-fat/calorie snacks into my daily routine, especially during the school day. This will hopefully help keep my sugars more regular throughout the day. I also need to try to add more protein to my breakfast in hopes that I don't get low so quickly before lunch.

This is the poster I stared at for an hour and a half
in my room while I waited to see the doctor. It's a great, simple
explanation of CF lungs. :-)

I finished up with the Endo around 11, just in time for me to go one floor down and check in for my CF appointment at 11:30. They took me in close to 11:30, checked my vitals and I sat in the room until about 1-1:15 until I saw the doctor. In that time though, I did do my PFTs. Going into it I was feeling good. I was a little worried that since my weight has dropped (109.4 today - yikes!) that my lung function would go with it since they usually go hand in hand. But, I was feeling really good, so I was hoping for the best. The first one felt good and when I looked up at the screen, the first number I saw was 79 and was super bummed! And I said, "Oh man! I haven't been that low in a long time!" And the RT looked confused at my reaction and pointed to where I should have looked...the beautiful number: 86! YES! It's not a significant change, but I'll take it! I was so excited. So I did the test again (we always do three) and I blew an FEV1 of 88! Coughed a little bit and said, "Alright, lets go for 90." Well, this one wasn't as great and turned out to be 84. The RT said that I was getting too tired and we stopped there. My FEV1 averaged out to 86% - woo hoo!
My CF doctor was very happy with my results. She said that my graph looked very "pretty" and NORMAL! We discussed my weight loss and attributed it to me burning more calories at work, not in-taking enough calories throughout the day and some malabsorption issues I've been having with my enzymes. We decided to try switching my enzymes to Zenpep to see if that'll help me absorb more calories along with eating more during the day. Other than that, she was very pleased with my health and agrees that I'm still borderline CFRD.

The view of the sunset on the drive home :)

I left her office around 2:00, went straight to the lab to get six vials of blood drawn, then back to the Endocrinology department to meet with the diabetes educator so she could show me how to give myself insulin shots if/when the time comes for me to need that. We figured it would be better for me to learn now, just in case we decided I need it later, then I wouldn't have to schedule an appt with her (3 hours away) just to learn how to do it.
Around 2:45, I went down to radiology to get my annual chest x-ray. Of course I got stuck with the technician who didn't know what they were doing, so he had to take a couple extra shots and ask for help a couple times. My last stop was to pay for parking at 3:30! That's seven hours at the hospital! Needless to say, it was a LONG day. Plus, don't forget the 3 hour straight drive home. Phew!

Here's the short version:

~365 miles of driving

~7 hours of driving

~One tank of gas

7 hours at the hospital

Several hours of waiting

$18.00 for parking

109.4 lbs

No CFRD

86% lung function! = LONG, excellent clinic visit for me! :-)

Positive Thoughts Thursday

Sometimes I feel like I use this blog to vent/complain about things going on in my life, and I don't want to continue with all of that negativity. So each week I'm going to compile a list of positive, happy, lucky, fortunate things that are going on in my life, or anywhere in the world.

Old Vest on the left (model 104), new Vest (model 105) on the right.
The old Vest had 1,215.2 hours
logged - I think it was about time for it to go. 

• For the past couple weeks, my Vest hasn't been inflating properly. I noticed a hole in one of the hoses, so I called Hill Rom (Vest company) and had the hoses replaced. That didn't solve the problem. So I finally  called Hill Rom again on Monday and explained my problem. Without any hassle, they overnighted a brand new Vest to my house! And  they had UPS come pick up my old Vest for free. 
• This new Vest is awesome! It's amazing to me how tight this one is during treatments - makes me wonder how many other people are out there with under-inflated Vests. Had mine never 1/2 inflated, I would have assumed that it was working just fine, but this new one is squeezing so much tighter - it feels good! 
• I'm so happy that Hill Rom is so helpful! Any time I have a question or need something for my Vest, it's no questions asked. They are so wonderful about filling my needs and helping me out. Thanks, Hill Rom! :)
• I'm so happy that I had a great clinic visit today! I'll post more on that later this evening or tomorrow, but I had a lot of questions answered and I cannot express how much I love my CF doctor - she is so wonderful! 
• I'm also glad that I met an awesome Endocrinologist today! He was so calm, welcoming, and full of information. He is also very understanding of me living so far and gave me his email and told me to contact him anytime about anything. Love when doctors are like that! :-)
• I'm looking forward to going back to work tomorrow (just for one day, because I know it'll be nuts) because my class was apparently terrible today and the sub "was an idiot" according to a staff member. Tomorrow should be interesting since my kids will be off the wall and I have my third observation, awesome....

Lots to be thankful for this week! Stay tuned for a very in-depth post about my trip to Chicago today.

Another Glucose Test

Just the sight of this picture is making my
stomach turn, eww!

I'd love to say that I took advantage of my day off today by sleeping in, but of course not. I was wide awake this morning at 6am, so I decided to go in early for my Glucose Tolerance Test. The lab is open 6am-6pm on weekdays, and I was planning on sleeping in a little bit and going in whenever I woke up, but of course this morning I was up before the sun. I figured I'd beat the crowd (if there is one at a hospital lab) and just go get it over with. I arrived at the hospital around 6:30, got registered/checked in and had my first fasting blood draw around 6:50am. My blood sugar was 109 (good!) and then I had to drink the lovely glucose drink...this time it was lemon lime flavored -- tasted the same as the others: nasty!

I decided to wear a mask while sitting
in the waiting room for two hours. I
definitely got some weird looks, and no
one sat by me, but I was being cautious.
I was not taking a chance at catching
this nasty flu going around!

This time I was smart, for my two hour wait, I brought a bunch of laminated stuff for work that needed to be cut out. The people in the waiting room probably thought I was crazy, but at least I was getting some work done! Around 8:45, I took my own blood sugar (because I wouldn't get the results from theirs) and it was 137, which I believe is good. So unless it spiked or dramatically dropped over the next ten minutes, this test was more normal than the one I had in November. The fasting sugar was a little high, they like it to be under 100, but at least the two hour was not as high as it was before. I'll be going in this afternoon or after work tomorrow to get a copy of the results to bring with me to my Endocriologist and CF appointments on Thursday. I'm interested to see the Endo's take on the results of this test compared to the last one, plus with the results of my sugars that I've been recording for the past couple weeks. Stay tuned :)

Great Strides

I'm also selling Colleen's Friends & Family
team t-shirts again this year. The shirts
are $20 each and any money left over
from t-shirt sales will go directly to our team
fundraising total. The more t-shirts
ordered, the less each one will cost = more
money donated!

It's that time of year again where I start getting a little crazy with Great Strides! I'm excited to say that this year I'll be walking at at least two different locations. I have officially registered Colleen's Friends & Family at the Bloomington walk site this year and I'm hoping that Colleen's Cortland Crew will get renewed at the DeKalb location, too.
For those who may not be familiar with Great Strides, it's the Cystic Fibrosis Foundation's largest fundraising event. CF does not get any funding from the government, so all research funding is based on donations. There is no cure for this disease, but everyday they are learning more about CF and creating drugs to help those of us who have it. To learn about the drugs that are in the works and to see where your donations are going, click here.

Click here to join the event I've created on Facebook

Click here to view my Great Strides Team page, donate and/or join my team.

Last year Colleen's Friends & Family and Colleen's Cortland Crew raised over $4,500!!! I have our goal set for $5,000 this year and I know  that it's possible! I currently have raised $15.00 out of my goal of $500. Please help me raise this total - no donation is too small! But don't be shy, come out to the walk itself - it's a great time! Just click on the link above and then click "Join My Team", it's super easy. HOPE TO SEE YOU THERE!!!
And if you're not from around here, go to the Great Strides Home Page and search for a location near you! :-)

More Positive Thoughts!

This is copied from Andy Lipman, a 38 year old CFer at "I Have CF but It Will Never Have Me":

Top 10 ways to stay positive:

1. Some people view failures as negative consequences of trying and not
succeeding…I view them as learning experiences.

2. Some people view having a disease as being a victim. I see it as being a survivor or even a fighter.

3. Some people say they struggle with their disease. I say I battle my disease.

4. Some people say life is unfair. I am grateful to be living.

5. Some people define living as breathing. I define it as much more than that.

6. Some people think losing is the worst thing that can happen to someone. I think it’s quitting that is far worse.

7. Some people think a disease steals your normalcy. I believe that it brings you an opportunity to make a difference.

8. Some people view depression as a negative. I view a failure to act against depression as a negative.

9. Some people view mistakes as daggers. I view them as opportunities to learn.

10. Some people have a disease. I will never let my disease have me.


Now go kick some ass!

Andy

I just really loved this post when I read it on his page and had to share it with my readers! :)

Positive Throughts Thursday

Sometimes I feel like I use this blog to vent/complain about things going on in my life, and I don't want to continue with all of that negativity. So each week I'm going to compile a list of positive, happy, lucky, fortunate things that are going on in my life, or anywhere in the world.

• Saturday was in the mid-50s and it was awesome! Tim and I went outside and played catch in the backyard, opened the windows and enjoyed the spring-like temperatures. :-)
• One more week til my CF clinic and Endocrinologist appointment in Chicago. I'm looking forward to talking with my doctor after not seeing her for six months. I'm also looking forward to getting more answers on if I'm diabetic or not.
• I'm lucky to have a day off on Monday so I can get a repeat Glucose Test without having to miss a day of work.
• My students are hilarious and I missed them. They may be testing my patience a little bit this week, but I'm so happy to be back at work.
• I'm going to Country Thunder this summer and super excited!!! 
• I'm currently listening to this song and I love it!

Positive Thoughts Thursday

Sometimes I feel like I use this blog to vent/complain about things going on in my life, and I don't want to continue with all of that negativity. So each week I'm going to compile a list of positive, happy, lucky, fortunate things that are going on in my life, or anywhere in the world.

• I love my job! Although I am extremely exhausted this week since I didn't do a thing over break, I am thankful to be back at work. I crave routine and I just love my class. They crack me up. Today one of my boys said "yeah buddy!" when he saw that he was at the "Board/Card Games" center. 
• My students are so smart! :-) It's so cool to see how much they have learned from the beginning of the year! They're like little sponges! I have some who came in knowing barely any of their letters to now beginning to read! Makes me so proud! :-)
• A new episode of Impractical Jokers is on tonight. It's on TruTV and HILARIOUS! If you've never seen it, I highly recommend it! Tim and I die laughing every episode! For those of you who've seen it, who's your favorite? I really like Joe and Murr! :)
• I'm 10 days into my TOBI month and I've been feeling really good. Tobi usually makes me cough quite a bit more when doing my treatments, but I haven't had a lot of mucus production lately - which is a welcomed break. I've been feeling like I've been able to take some nice deep breaths without hacking up a lung, so that's been really nice. I like being able to breathe like a normal person. I hope it shows in two weeks when I have my next CF clinic appointment.

More Than Just Miles

When I see or hear about non-CFers raising money and awareness for CF, it makes me feel warm and fuzzy inside...it really does! It makes me happy, proud, excited and encouraged that someone who's not physically affected by this disease is taking time out of their day to help me and the other 70,000 people world-wide with CF. THANK YOU!

Click on the picture to go to the website

I've been following this guy, Tommy Danger, on Facebook for a while (don't even remember how I found out about him) who's created More Than Just Miles (Facebook page), where he's literally running across the country to raise awareness and money for the Cystic Fibrosis Foundation. If you google More Than Just Miles, I'm sure you'll find several articles about this - I know he's been on the news a bit lately. Here's some information from his Facebook page:

"Running across the country to prove that every step I take, every mile I run, every day I finish will never compare to the life Ethan must complete EVERY SINGLE DAY. Raising awareness and money for the research and cure for Cystic Fibrosis and all of its victims it challenges everyday. Speaking to schools along the way to motivate children and adults to live their life, smile, and always pursue their dreams no matter what obstacle lies ahead. We are the change in the world. Fear will not stop me nor slow me down. We will find a cure!"

Ethan is the son of his good friends and he's his greatest motivation. Although Tommy is running for Ethan, I know that everyone in the CF community appreciates what he is doing. I know I do! :-)

There's one thing that Tommy is asking us to do to help out: Collect pop tabs. He'd like us to collect pop tabs til sometime in April, when he'll give us an address to mail them to. And every single dollar that he collects from the pop tabs is going straight to the Cystic Fibrosis Foundation! Please check out his website and Facebook page for more information. This is an amazing thing he is doing and I'm sure he could use all of the encouragement he can get! :)