Thursday, January 31, 2013

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.
The cats shaking with me :)

  • I'm glad that I've been more open with my CF so that I can post hilarious pictures like this one (--->) on my Facebook.
  • It's exciting to see my students growing so much! I know I've posted about this before, but it just makes me so happy!
  • Tomorrow is our 100th day of school!
  • My Great Strides team (Colleen's Friends & Family) has raised $115 so far! 
  • I'm looking forward to being completely lazy this weekend and doing nothing.

Thursday, January 24, 2013


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
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.

Monday, January 21, 2013

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 :)

Sunday, January 20, 2013

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! :-)

Thursday, January 17, 2013

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!


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!

Thursday, January 10, 2013

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.

Sunday, January 6, 2013

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 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! :)

Friday, January 4, 2013

Positive Thoughts Thursday

Yes, I realize it's not Thursday, but this is something I want to start this year -- it just took me a little bit to figure out what I wanted to call it.
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. Here's my first list:

  • I am very lucky to have access to amazing health care professionals to help me with my CF and now CFRD, to keep me in tip top shape.
  • I loved having the past two weeks off of work. I was able to sleep in a lot, spend some time with Tim, clean the house, read some books and most of all: relax! 
  • This week I talked to my awesome friend, Catie, about life. I love having such a wonderful, supportive friend. :-)
  • Tim and I started exercising together this week. I want to gain some muscle weight and Tim is working on being healthier. Its been fun doing the work outs together and encouraging each other to be healthy. 

Thursday, January 3, 2013

CFRD Follow Up

1/3/13 - See this post for the first part of the story

I had an appointment with an Endocrinologist today at a clinic closer to home. I thought it would be a good idea to get the opinion of someone a little closer (45 minutes away instead of 4 hours away where my CF clinic is). Well, the problem with that is their specialty is diabetes, not CF related diabetes...
I was a little frustrated because the first doctor couldn't find my latest Glucose Tolerance Test (GTT) results, which made me think she had no idea about me before even coming in. Then while she was searching the computer for the results, she asked me if I had any medical problems...uh yeah...which then confirmed that she knew nothing about me before coming into the room -- that just annoyed me. Anyway, she said that my A1c - don't know what it stands for, but I know its about your blood glucose - was 5.5. I was always under the impression that I wanted to keep that under 6, so I felt that was good news. When I asked the doctor about this, she said that the "normal range" is somewhere between 4.8 - 5.2 or something like that, so mine was slightly elevated which means I'm "pre-diabetic". Okay, great, no diabetes - wrong. Then she said that since my fasting blood sugar was 219 last time, and its supposed to be between 140-160, that means that I'm diabetic.

So, I'm under the impression that I'm just borderline diabetic?? They weren't very clear.

Either way, the first doctor wanted to do a physical exam (check neck, stomach, listen to my lungs, etc) and was surprised by my stomach scars and made a comment about my clubbing. I don't think she's ever dealt with a CF patient before... She told me that they'll probably start me on Metformin to help regulate everything and have me start checking my blood sugars at home. When I told her that I already talked to my CF doctor and she told me Metformin usually doesn't work for CF patients, the Endo pretty much ignored me and said that we'll try it anyway. She said, "Well you take oral antibiotics and those work? So we'll just give this a try." I just smiled and nodded.
I'm not trying to be rude, but I just don't like being seen by people who have no idea about CF or CFRD. This is something completely new to me and I just wish they had some CF background! 

Try and get that ridiculous song
out of your head now! :)
She then left and came back with another Endo who basically said the same thing. Since my 2 hour fasting blood sugar was so high, I'm considered diabetic. He would like me to get retested (good! - not sarcastic) to make sure this wasn't just one abnormal test, but he did say that the next test will probably come back abnormal, too. So, while I'm waiting to get my next GTT, I have to check my blood sugars twice a day, everyday. The nurse then came in with my new medical equipment, which you may recognize: Accu Chek Nano. The nurse did an awesome job showing me how to use my new friend and told me that she liked this one much better than another one she showed me because "its sexier".... Again, I just smiled and nodded. Haha!

These Endos want me to check my blood sugar twice a day, everyday and fax them the results after about 4 weeks. They also want me to get re-tested and follow up with them in April.

My plan: I'm going to check my blood sugar twice a day, everyday, until my appointment with the Endo from University of Chicago in a few weeks. This will hopefully give me and the U of C Endo more information about my daily sugars. I'm also going to schedule my next GTT as soon as possible (fingers crossed that I can get it at U of C on the day of my appts -- that's wishful thinking!). We'll see what my CF doctor and the Endocrinologist say in a few weeks...but I see this Accu Chek and I becoming close friends...


11/30/12 - This was originally written on this date, but I wasn't sure if/when I wanted to share this on my blog - especially until I had more information. Look for the "follow up" story in the next day or so.

I saw this on Facebook and I just couldn't stop cracking up! 
Of course about a week later, I was told that I might be developing Cystic Fibrosis Related Diabetes (CFRD). But before I get ahead of myself, let me explain. For the past couple years, I've had to get Oral Glucose Tolerance Tests completed to see if I was developing CF Related Diabetes. Having CF makes me more likely to develop diabetes. And I don't think it's Type 1 or Type 2, which is why they've called it CFRD.

Anyway, I had my most recent GTT completed in the middle of November at a local hospital instead of going all the way out to Chicago to my CF clinic. I've been getting them done in the winter for the past couple years and I knew that I was due for one soon. Since my CF clinic appointment got pushed back til January, I figured I'd get my testing done before I went so that we could discuss the results at my CF appointment. The test goes like this: Fast for 8-12 hours, get my blood drawn/blood sugar checked, drink a nasty glucose drink (this time my flavor was Tropical Punch - more tolerable than the Orange), wait two hours - no eating or drinking those two hours, then get my blood drawn/blood sugar checked again.
My fasting blood sugar was 101 and I went and sat in the waiting room for two hours. Then she calls me back to take my 2 hour blood draw and when she tests it, she goes, "Woah, that's high." So I got a little concerned and asked, "What was it?" And she said, "Well, I'm not really supposed to tell you." How can you sit tehre and say out load 'woah, that's high' and expect me not to be curious?! So she looked around (I guess to make sure no one would hear her) and she said that it was 219 and it's supposed to be under 125 if I remember correctly?
So, she started asking me how I was feeling and was totally freaking me out. She told me that I couldn't leave yet because she wanted to check with a doctor to make sure I was okay to leave. I told her that I felt fine, and that I was just a little bit hungry. She looked at me and said, "Oh, you're hungry?" (Note to self: don't tell a really worried, uninformed phlebotomist that you're feeling ANYTHING, even just a little hungry.)  Anyway, she found the on-call doctor and explain my sugars to him and he said that I was fine to go. They were going to fax the results to my CF doctor and a nurse would call me tomorrow to discuss these results.

The next day a nurse called me and explained that I might be "hyperglycemic" because I have high blood sugars. She said they'll probably put me on Metformin (an oral pill), which is typically what they give patients with high blood sugar. But she wasn't completely sure because she didn't know how it would interact with all of my CF medications. I told her that I'd talk to my CF doctor about it and let her decide since she knows me and my CF much better.

A few days later my CF doctor called me and we talked about the results. She explained to me that I'm "not falling apart" and not to get worried. We kind of knew this was coming because the past couple glucose tests were borderline high. She said she wants to set me up with an appointment with an endocrinologist at the University of Chicago (where my CF clinic is) to discuss my results. She's said I'll most likely not go on the Metformin that the nurse suggested because since it's an oral medication, my body already has a hard time absorbing things, I'll most likely have to go on injections -- yikes!!! That totally freaked me out!! But she said we won't know anything for sure until I see the endocrinologist. I'm currently waiting for that appointment to be set up, which will either be the end of December or the same day in January that my CF appt is on. But my CF doctor explained that if/when I get my sugars under control, it can help with weight gain and lung function = bonus! It got me wondering if this sudden weight loss is possibly due to CFRD? Hmm...guess I'll find out in the next couple months....I hope.