"We don't feel pain"

Finally! A good day in college town! I had had a pretty great 7 day break (snow, family, home cooked food, etc.) but yesterday and today were back to the grind, and they turned out pretty great! One day during break, I did a little retail therapy to help lift my spirits. I spent most of it on make-up and other g.irly items (weird, for me) but I'm so glad I did. I will actually put forth the effort in the mornings to make myself look decent! That helps motivate me to get up out of bed after doing TOBI. That, and my new hair dryer. I'm in love. Just look at it! I pretty much leave the little attachment thing on because the stylists use it on my when I get my hair cut and I love it. The shower-head looking thing makes me a little nervous! I'm off-topic now. Yesterday, both of my morning classes let out early. While I normally groan when my 8am gets out early because I just sit in the same building until 10am, I have found that I really enjoy chatting with some of the people who are also in both of my morning classes. They can be pretty entertaining! After my second class let out, I did some homework and waited for the boyfriend to make the drive from home to college. We made a trip to SuperOne (much needed!) and I baked a cake (yummm). While it was cooling, we went to the gym. YES you read right. I finally made it back to the good ol' gym. The boyfriend is helping me with arm muscle building machines so I can gain my arm strength back, and I always work on my legs. However, while I was doing one machine, my knee popped funny. It doesn't hurt unless I put a lot of strain on it, but I was nervous about running. So I ellipticaled (lol) a mile instead of running. I was proud of myself, but disappointed with the time and respiratory results. So...

Today I made it back to the gym! Yayyyy!! 2 days strong and I'm proud of myself. Today I did the treadmill instead of the elliptical machine and I could feel a difference. The pounding of power-walking (I dislike running on a treadmill) definitely loosened some junk up and I was coughing away (much to the worry of nearby joggers). I had a lot of good, productive coughing for the next 20 minutes after that too. Oh, and before the treadmill, I did all of the arm/leg machines again. Got to put weight on me somehow! And I miss my strength from being an athlete.

I was encouraged by Lauren's post (Read here), but I haven't yet had the time in my day to add in extra miles. With adding all of the weight work too, and working with a partner, it takes up a lot of time. That's not a complaint, but when I have the time, I'll definitely up the distance. It may be some serious power-walking, but it helped! Baby steps....

So the boyfriend has put himself on a diet. Using my amazing new Kines knowledge, we have worked out a calorie amount for him to lose weight to, along with working out. So less about the "weight" and more about the "fat", if that makes sense. Anyway, because of our VERY different needs in calorie intake, we've come across some problems that will only get worse with time: how do I feed both of us together?? I need excess calories/sodium/fat and he needs just the opposite! We're trying portion differences if we share something cooked (I eat 2/3; he gets 1/3). He's cutting out most snacking (unless it's healthy/low calorie; and then it's limited) while I eat constantly. Me eating makes him want to eat too. Poor guy... I really do feel badly about it, but there's nothing either of us can do right now. I need to gain weight and he's trying to shave it off. I'm the one who is really pushing the gym right now, and I know he'll always go if I go. So go we shall!!

Oh, and the gym. So two days now, and there's only one part of my body that hurts: my hands. I'm building my calluses back and they HURT!!! Working out was so painful today, but mostly in my hands! Oh well. Another day at the gym with the phrases "We don't feel pain" and "I ha.te you Chase Wooten" running through my head.

Time to explain. Chase Wooten was one of my keeper trainers/off-campus soccer coach/soccer camp keeper coach over the last 8+ years of my life. He was the only trainer I've ever had who I actually wanted to keep pushing myself for. He was a great motivator and a hilarious guy. (Oh! I'm saying "was" because I'm "retired" and he moved away.) If the training started to hurt, "Nope, we don't feel pain. Let's go." I don't think I've ever pushed myself harder than when working for Chase. He made training so much fun with his dry sarcasm and comments that made me laugh and want to do better. So, I personally adopted the phrase "We don't feel pain" as my workout slogan for when I don't think I can lift another weight or take another step. And I don't actually ha.te Chase, not at all, but that's another thing I would say to him as I worked because it hurt and he was the one pushing me. Just another joke to get through the pain.

So, if I was a great author like Betsy, CG, Ronnie/Mandi, or Lauren, I would end this post in a cute way, tying in "we don't feel pain" to some metaphor of life. But I'm not, so I'm just going to end it with this: tomorrow morning, I dye my hair. Goodbye brown. Hello red.

-Andrea

Today is already off...

Ugh. Ugh ugh ugh. Mondays can sometimes be really annoying, ya know?

Last night, I started TOBI up again. UGH. If you haven't noticed, I'm not a fan. I now do TOBI with a towel over my pillow so it doesn't leave those little stains. It really helped this morning. However, this Monday was unusual in a different way. Today, in biology, we were talking about genetics and the diseases. I looked ahead and OF COURSE, CF was in there. I've been bracing myself all week...

So this morning, I get up, do treatment, shower, and look up my two genes to make sure I have them down right. I'm running late, as usual, and rush out the door. All I can think about it the lecture. What is he going to say? Will I feel compelled to stand up and correct him? Will the class of roughly 100 now label me as the kid with "thick mucus in her lungs"?! Halfway to class, I realize that I've been so stressed and distracted, I left my backpack in my apartment. Great. But it's too late to go back, so I keep walking.

The lecture begins and we first touch on PKU, sickle cell anemia, and then finally CF. He tells the class to all be thankful we have thin mucus in our lungs, and then proceeds to discuss the biological problem. Very little else is touched on and the lecture continues.

After the class, I went to talk to him. It took him a few minutes to realize that I was saying that *I* had CF. Then his eyes widened and he instantly wanted to know more. So I told him which genes I had, the diet I had, about the Vest, about the treatments and medicines... he asked a few questions but listened more than anything, nodding his head regularly. At the end, as I was walking out the door, he said, "Take care of yourself... literally." "Yes sir. I always do."

He saw me outside later and asked my name. I am now, officially, the only person in that class he knows by name. Good or bad? Not sure. But since I'm a pretty good student, and I'll be taking another class with him next quarter, I'm thinking good.

But still. Ugh. Mondays.

-Annie

Daily Life and Background

Daily life for me is in the middle of readjusting to living in a new city for college, but that doesn't change my CF routine. And why doesn't it change my CF routine? Because that routine is such a small part of my life that it takes a lot to be affected.

Whatever time my alarm goes off (or whenever I wake up), the first thing I do it get my morning treatment ready. I'm on auto-pilot during these times, especially those mornings I get up in the 5 am time frame. I do TOBI on the 28 days on/28 days off regimen so when I'm on TOBI it's Albuterol and TOBI, otherwise it's just Albuterol. After I'm ready for school/church/the day, it's breakfast time!! With breakfast I take those morning meds: 5 Pancrease MT20 Enzymes, Oscal Ultra with 600mg of Calcium (and no Iron), Align probiotic, Vitamin E, Vitamin K (every other day), Mucinex, Milk of Magnesia, Zyrtec, and Zitromax (MWF). Come lunch time, I pop 5 more of those Enzymes. If I'm kinda sick or just feeling in need of some better breathing, I do an extra Albuterol treatment whenever I can fit it in in the afternoon. "After school" hours means another meal! And 5 more Enzymes! Dinner brings more of the same and a few more pills: Oscal Utlra again, Prilosec OTC, Milk of Magnesia, and another Mucinex. Sometime before I go to sleep, I do my evening treatment: Albuterol, Pulmozyme, (TOBI when I'm on it), and ~13 minutes of my Vest on pressure 6 and frequency of 11.

To assist with the weight gain, I also drink ScandiShakes (chocolate!). They are fantastic.

I don't have the specifics on my FEV1 but it's usually in the high 60s low 70s with the %. Next appointment, which is late October, I'll try to remember to write it down. I'm 5'4" and ~119lbs.

Hospitalizations: I stayed in the hospital from the time I was born (Oct. 29) until Dec. 10. During that time, I was diagnosed with CF, treated, and had meconium ileus. Because of that, I had surgery to fix it (and they removed my appendix). Sometime when I was 3, I went back due to obstruction and they reopened the same scar from surgery #1 and fixed it. So now I have a sweet 6-inch scar across my stomach just above my belly button. Swimsuit season used to be a curse for me, but now I wear my scar proudly. 7th grade, I went in for my first IV antibiotics because I was so sick. 4 days in the hospital and 2 weeks total on IVs. This was before PICC lines. So I had a needle in my arm. Fun.... not. I've been back in the hospital 3 more times for antibiotics (with PICC lines): once during the end of 11th grade, during Thanksgiving of senior year, and during March of senior year. The March of senior year was for a short course to prepare me for sinus surgery, my first ever. Post-surgery, the day after I was sent home, I fell ill to pneumonia. So back to the hospital I go for more antibiotics and more Vest usages. Of the combined surgery and pneumonia stays, I was there 12 days. That was too long for me.

Genes: I have the DeltaF508 and some rare one that I can't remember the name of it. They just figured out what it was a few years ago. Last I hear, they considered it a "null gene."

Diet: Anything goes. High calorie, high protein, high sodium, high fat, high carb....

Oh, the reason for the milk of magnesia in my diet is because in 5th grade, I had been waking up every morning with severe pain in my abdomen but no doctor ever found anything wrong. Finally, after drinking barium and having a barium anema done, they learned I have a stricture in my colon (narrowing of the colon) and need M.O.M. to help my digestive process.

Family: I have 2 older brothers. Neither have CF. One has been tested so far and he is not a carrier. My other brother will get checked soon. I'm the only known person in my family to have/have had CF.

Not sure what else to tell you! Any questions? My email is at the top of this blog at all times.

-Andrea