Fun Weekend!

This past weekend was Austin City Limits music festival! Greg and I have gone every year since it started seven years ago. We LOVE it! It's so fun to discover new bands, and to hear some old-school acts. My favorites this year were Hot Chip, John Fogerty, David Byrne, and Manu Chao. Here are some pictures from the weekend:

Our friend, Greg, and I (I don't know who is the random guy smiling in the background)


Friend and I at Hot Chip


After a Few Drinks......


Extreme Close-Up


It was Very Dusty!

Protecting my Lungs from the Dust

Recovered & More Thrush Stuff

I am officially feeling FANTASTIC after my surgery! I am not coughing at all, which is something I didn't expect, and I do not have anymore of that annoying post-nasal drip. And I am am amazed by how much better I can breath. It was soooo worth it!

So I never did provide an update on my thrush saga. A few weeks ago, my throat starting hurting so badly I winced every time I swallowed. I started seeing the white patches on the back of my throat again, so I went back to my PCP. He said I probably just had a virus, but took a throat culture to test for strep. It came back negative, and he reiterated that it was a virus. But, he called in a prescription for Diflucan when I whined that I thought it was thrush. A few days later I had my surgery and told the anesthesiologist I was on Diflucan for oral thrush, and he took one look in my mouth and said "your diagnosis is definitely correct!"

All I can say is Thank God for my brother and sister in law. I don't know why, but none of my doctors (CF doc, my PCP, or ENT) are taking this thrush thing seriously - they completely brush it off like "engh, it's not a lung infection." I want to scream at them "HELLO! I HAVE FREAKING MOLD GROWING IN MY MOUTH AND IT WON'T GO AWAY!"

My brother in law is a doctor, and my sister in law is a nurse practitioner. They are both very smart and understand that, I have been battling thrush for three months now, it keeps going away and coming back, so obviously I need something more than a few days of diflucan to completely wipe it out. They have me on four weeks of diflucan (100 mg) - something a few nurses told me there's no way in hell that any doctor would prescribe. But my sister in law says they do that at her for chronic thrush all the time. My fingers and toes are crossed that it works!

Thank You!

I just wanted to write a quick post thanking everyone for their well wishes (regarding my surgery). It's always very touching!

It Went Well!

My surgery went well! Yippee! I had hardly any nausea, and I am not anyway near as tired as I was last time. Hopefully this means I will be back at work by Tuesday at the latest.

I told the anesthesiologist about the 10 days of dizziness I experienced after my last surgery, and I let home know I have a vomiting phobia. He agreed phenegran most likely caused the dizziness, and he gave me 2 different anti nausea meds. He also gave me two medications for acid reflux meds and something for anxiety. The cocktail of drugs really helped - I didn't freak out much, (just a little bit of shaking and a few tears), and I had almost no nausea during recovery!

The only thing worse this time is the bleeding. After my last surgery, I only used one gauze pad to catch the bleeding from my nose, and I took it off about two hours after my surgery. Today I've been through about seven and wore them almost all day.

We were home by 11:00 and spent most of the day following hurricane Ike coverage. Our thoughts and prayers go out to everyone impacted by the storm.

Going In

I up super early, doing my medicine, because I have to be at the surgery center at 6:30 ::YAWN::

The nurse said I should be in and out in three hours, which is sweet. I'll post more afterward, when I'm awake!

I'm an Emetophobe

Yep, I suffer from an irrational fear of vomiting, or emetophobia. I freak out if someone around me gets sick, and I am terrified of getting sick myself. And by “freak out”, I mean trembling so much my teeth chatter and breaking into a cold sweat.

I'll do almost anything to prevent getting sick. I have seabands in my nightstand, Dramamine in my purse, and a box of ginger tea in my workbag. When I do feel nauseous, I'll sit on the bathroom floor with a cool washcloth on my forehead, wrapped in a blanket in attempt to stop the shaking, asking God to stop me from throwing up.

I'm also an obsessive hand washer, and get really nervous when I'm around anyone who has recently been sick (I don't want to catch the stomach flu!). However, I am lucky that I have no issues eating (some emetophobes avoid certain food or just eat less overall to avoid getting sick).

I've had this fear for as long as I can remember. When I was young I would promise God that I would not eat any sweets for three days if he would stop me from getting sick - and I would stick to my part of the bargain. I actually had a 13-year no puking streak that was ended by a bad grapefruit. At the time, I remember thinking "I was afraid of that all those years? That was not so bad!" But my fear slowly came back, and, when I got sick again a few years later, (from too much alcohol mixed with too much Advil), the experience was so horrible my phobia came back in full-force.

This is going to be an issue if I get morning sickness, and it is something I think about a lot. I'm also very nervous about how I am going to take care of my future children when they get sick. I am considering visiting a hypnotherapist to see if it helps - the main reason I haven't yet is free time (I don't have much of it).

So, this is my biggest worry about tomorrow's sinus surgery - getting sick during recovery. Logically, I know it's silly, but I guess that's why it's called a phobia - because it's illogical.

I am hopeful because I did not get sick after my last sinus surgery. But I kept asking for more and more anti-nausea medication, which then made me dizzy and unable to work for 10 days after the surgery. So I am going to try to be strong and not ask for so much medication, because I cannot afford to take more than two days off from work (I only have two sick days, plus, I have a lot of work to do).

My fingers and toes are crossed that I stay strong, don't throw up, and don't freak out! ;)

I'm a CF Advocate

On Friday I met with a representative from my congressman's office (Congressman Michael McCaul). The cystic fibrosis foundation organized a nationwide initiative for people to meet with their Congressman and tell them their "CF story." The main points of the meetings are to make our Congressmen aware of CF and encourage them to vote "yes" on bills supportive of CF research and funding for CF patients.

Overall, I felt like a bit of a tool - I kind-of rambled my way through the meeting and forgot to mention a few key points about my CF story (such as my surgery scheduled for this week!). I think part of my problem is that my CF is so mild I felt like I was complaining about something I should feel thankful for - you know "feel sorry for me and vote on CF issues because I'm sooo sick..." The entire time I was wondering if she was remembering the terminally ill cancer patient she recently met with and thinking "Girl! You aren't sick! We've got WAY more important diseases to fight for!" (However, she gave ZERO indication of this and was VERY, VERY nice, and I really liked her).

The meeting definitely had some positive outcomes. She was not aware of the Congressional CF Caucus and was excited to hear about it. It would make me very happy to see his name listed on it sometime soon. She was also interested in learning more about local CF fundraisers, - it be awesome to see him at one of those! I just keep reminding myself of these positive outcomes so I don't feel too embarrassed :)

CF & PG - I Just Learned Something New

A person on the CF forums posted a link to the Cystic Fibrosis Research, Inc. (CFRI) webpage, which currently lists the slideshows presented at their annual conference. One of these is titled Sexuality and Reproductive Issues in Cystic Fibrosis. It has several slides on pregnancy and CF, and it lists a few facts I didn't know, including:

• Not only do we have issues with thick CM, but we also lack ferning around ovulation (ferning is a mechanism that allows the sperm to swim through the CM)


• Ovulation requires 100 calories - This could be an issue for PI (pancreatic insufficient) CFers who have trouble getting enough calories


• A BMI of 20 and FEV1 of 50% is preferred before getting PG


• CFers are at greater risk for gestational diabetes compared to non-CFers
  


• Lung function is higher during a woman's lutal phase (after ovulation) that it is before ovulation
  


• They really stressed that "It is motherhood not pregnancy that may impact on one’s health!"

The slideshow also listed a few things I'd already heard, including CM creating a sperm barrier, and the need for careful pregnancy planning with the CF team.

It is encouraging to see that so many women with CF are successfully having children!

Fun Weekend!

Greg and I had a fun over Labor Day Weekend. Seeing as we can't get knocked up this month, we decided to spend lots of money this weekend ;) On Saturday we went to Home Depot and ordered a new vanity for our master bathroom. Then we went to dinner at The Driskill Grill - we had the chef's tasting menu with wine pairings and it was AMAZING - one of the best meals I've ever had. On Sunday we went to our friend's lake house, and yesterday I began working on "project organize our closets."