Don't Dream It...Be It.

Once again, I've gone months without attempting to log into this blog. Fail.

An even bigger fail is that I wasn't able to log into this account for like an hour because apparently they've changed everything over to google and when I created this account years ago, it was not with a gmail address. I will have to figure out what to do with all of this soon, if I intend on continuing to make any use of it.

Let's see...I wrote back in the summer. Hmm...

The August clinic appointment went well. Not great, but well enough. I need to work on airway clearance. The kid got off to a good start in 7th grade. Busy World is Hushed went well--or so we thought--but got terrible reviews. Oh well. Can't please 'em all.

Towards the end of that production I did go out on a limb and audition for the Rocky Horror Show. And much to my surprise, I was cast, though not for the roles I wanted. I was cast as Eddie and Dr. Scott. In the end, I was pleased with that, though, because I actually got to sing two solos, and be a part of the floorshow/finale ensembles, and that was pretty amazing.

The show finished its run 4 days before my 37th birthday, and I commemorated the event with a new tattoo on my left wrist. It's the Seal of Rassilon from Doctor Who and around it are the words," Don't Dream It...Be It." I love it. It makes me happy.

Things at home have been all over the place. That whole emotional breakdown I talked about a few months ago is still teetering. We've lost the second income that was in our monthly budget and so that has added considerable strain onto our already fragile bubble. We easily swing from moments of complete and utter contentedness to uncontrollable emotional outbursts. We're up, we're down, we're here, and we're there. But only occasionally on the same page. Just another speed bump. This, too, shall pass. (though it would pass a whole lot quicker if we'd win the lottery.)

And so, I've been looking for some side work. It's good that we are a bubble full of jack-of-all-trades. We have various marketable skills between us and have been filling our time with things like ghost-writing, graphic design, web design, sales, repair and other odd jobs, and now live trivia in local bars and eateries. Its not glamorous, but it buys the groceries.

I'm headed back to the CF clinic next week. And of course, I'm coming down with a cold just in time to see them. Health wise, this has been the best fall I've had since 2006. Yet, my PFT will be lower because I'm all congested now. Fantastic.

Christmas is coming up fast and we have no money for presents. This will be the second year that I don't send out Christmas cards. I am going to attempt to make gifts, though. We'll see how it goes. I'd say, coming into the month of December, we're about $1,500 red. Life really has a funny way of kicking you in the nuts and laughing while you roll on the floor crying, "Why did you do that? What did I ever do to you?"

Now that I think I've got this whole log-in thing mastered, I will...once again...attempt to blog more often. At this point, it may be therapeutic...or cathartic...or at the very least something to do to distract me from the realities of every day life.

So Sayeth Bridget Jones...

"It is a truth universally acknowledged that when one part of your life starts going okay, another falls spectacularly to pieces"~Bridget Jones

I was just re-reading my most recent posts, which, sadly, can now be classified as "old" posts. I particularly enjoyed the one from early in May when I outlined just how psychotic my month of April had been, and how my health was slowly taking a turn for the worst.

I did go to that clinic appointment. I was told that there were "no breath sounds" in my lower right lobe. Fantastic. Took a little Cipro, tried to get as much rest as possible, which, much to the dismay of those around me, meant use of the word "no." I went back again in July. But we'll get to that in a moment.

In June, Rylie and I took our long-planned plane trip to NY to visit with my family. It was financially strained, physically draining, and much too short. But we had a fantastic time and wish we could have stayed longer. We got home from NY on 6/22 to a barrage of messages from family that said our father had been taken to the hospital for what they feared may have been a stroke. That was a Tuesday night. All day Wednesday, I did laundry, paid bills, ran errands, and so forth. Rylie and I literally emptied our luggage, washed the items, and then re-packed them. We left for my parents' house at the beach on Thursday.

We spent a little over a week there, including the date of my follow-up clinic visit. At this visit, my pft had improved ever so slightly, and there were very faint crackles present in my lower right lobe. This seemed promising to me, as some sounds--even bad sounds--are better than no sounds at all. I'd rather think that my lung is mucked up and waiting for proper clearance than think that it's been reduced to a paperweight.

We got home with mere days to spare before Garrett and I were expected to run our church's vacation bible school program for 4 nights. By the time it was over, I was pooped! Rylie and I spend the next week and half playing catch-up on all the things we hadn't done around the house (would've done more swimming, but Rylie ended up sick for a week with a terrible ear infection.) And then the last week of July, we headed back to the beach once again to stay with parents and to babysit my nephew's daughter while my sister was out of town.

During this time frame I started taking the newly FDA approved drug, Cayston. I was about two weeks or so into the treatments when I woke up with severe upper right side chest pains while at my mom's. I ended up spending an entire day in Waccamaw emergency department (an experience I wouldn't recommend, but it's slim pickens at the beach). In the end, after an ekg, and x-ray, a chest ct, being parked in the hallway in a gown on a gourney in front of a room where a man was coughing up chunks of blood, I was told that they "think the scans look how they would if I had pneumonia." They "THINK"??? This is also a doctor who never even listened to my chest. This is a hospital where the triage nurse, even after being told that I had CF and chest pains and trouble breathing, made me wait an hour before being triaged. This is the hospital that never asked what meds I'm on other than those I'm allergic to. They never took a complete history. This is the place where the charge nurse says to me, "So, you have cystic fibrosis? How did you catch that?" So, why should I have been surprised that the doctor who "thinks" its pneumonia decided not to prescribe me any antibiotics?

It's not worth fretting over. Sure, it's a day out of my life I'll never get back. Sure, I'm probably carrying some strain of TB or God knows what else from my hours in the hallway. And yeah, it will probably take 10 years to pay for the visit since I have no insurance other than Medicare. But, the timing was bad. I was up to my eyeballs in parental drama and didn't have time to properly be sick or get diagnosed.

We were at the beach for a day or so more than a week. I cried a bit on the drive home. I've cried a number of times since being home. In the last few weeks, I think I've come closer than I have in years to having a breakdown. And the sad part is, most of what saddens me are things so far outside of my control that what's the point?

So, for now, I've been hibernating at home in our bubble. Partly from necessity since it's been 100 degrees in the south for some time now and going outside nearly kills me. But, I've been catching up on my rest, catching up on some reading. I auditioned for another play, The Busy World is Hushed, and got the part. So, now things will get busy again since I'll have rehearsals practically every night between now and September 12. Rylie starts back to school in less than 2 weeks, so that will also change things around here. I've fallen off the wagon where my medicines are concerned, but am working on getting back into routine again now that I'm home.

I go back to the clinic again at the end of August. Hopefully, it will be a good visit and I haven't screwed myself up too much this summer. I feel like the last two months have just been a giant blur. Physical exhaustion...emotional exhaustion...I'm due for a rebound!

It's time to try defying gravity!

Graduation Day!

On Saturday May 8, 2010, my husband will graduate from Winthrop University. There's really nothing more to say on that except that I am so very proud of him. The last 3 years have been very difficult in this household, and there were at least a dozen different times where quitting would have been easier. But in life, doing what's right doesn't mean doing what's easy. We pulled together as a family and stood by him. Garrett worked his tail off, most days running on a mere 3 hours sleep. And he got it done. So well in fact, he wasn't that far off from graduating with honors. Personally, he could've graduated as a D student and I wouldn't have cared, so long as he finished what he started!

So, I've been party planning for the last month on top of everything else. This week has been a little rough since I'm in full on CF exacerbation mode. All I want to do is go to bed and sleep for a week. But it's menu planning time and decorating time, etc. Tomorrow morning we get to watch him walk across that stage finally. And later on, we will get to celebrate it all with family and friends and a ton of food, music, and cake!

I can't wait! I am so proud of him. He has set a great example for our daughter and I know that she is bursting at the seams to get to witness his commencement ceremony.

We love you, Garrett! Congratulations!

Spring Myself into Summer....

Back in February, when I last posted, I had every intention of typing on here at least 3 or 4 times per week and making a serious go of this whole blogging thing.

Hahahahahahaha!

Once again, life got in the way.

I should have known better than to want to accomplish any personal goals as spring festival season was approaching. Rock Hill's annual Come See Me Festival took place from April 16-24. In the month or so leading up to the festival, I spent most of my time soliciting for prize donations and trying to "adopt" out frogs for the RHPRT Frog Float which benefited Cystic Fibrosis. I worked the souvenir/frog booth on the 15th at Beach Bash, the 16th at Gourmet Gardens, Garrett and I sang as Elton John & Kiki Dee and as Sonny & Cher at the Divas Through the Decades concert on the 20th, we sang a selection from Hairspray at Glencairn Gardens Broadway Nights on the 22nd, and worked Moonlight & Jazz on the 23rd. The Frog Float was on the morning of the 24th...thankfully, the tailgate and fireworks extravaganza was rained out that evening. But I did make it to the Edge Theatre Company's auditions for the Shadow Box that afteroon.

In addition to the CSM responsibilities, I agreed to assist my sister-in-law in directing the SC Strawberry Festival Pageant which was held on April 29th. So, at the same time I was prepping for the CSM week, I was also up to my eyeballs in paperwork and appointments and more paperwork, and pictures, and more paperwork for 28 contestants. It was a learning experience. It came off amazing given the little time and resources and volunteers we had to work with. I'm glad it's all done now.

The day after the frog float, we had interviews and choreography for the contestants. I left that night with a sore throat. Over the next few days it got much worse, add on some fever and head congestion, and by that Wednesday night for tech rehearsal I was sick as a dog. I made it through pageant night--barely--and had hoped to hibernate all weekend.

Wrong.

I was in and out most of Friday day time, and then that night (which I really didn't mind, I only wish I had felt more up to being there) Garrett and I had been given tickets to the Catawba Care Coalition's annual Dazzle and Denim AIDS benefit. It was fantastic! Saturday morning I had to be in Fort Mill for a little while at what I was told would be the official presentation/unveiling of the queens to the public. Turns out they did that on Friday night. Oh wella. The rest of the day (12pm-10pm yikes!) was spent with my 4 Cadette Girl Scouts (ages 11-12) building a recycling center for Aldersgate UMC as their Silver Award project. Many tired, hungry, thirsty, sawdust filled hours later I was ready to collapse. I didn't make it to church on Sunday. Thought I'd try to be sick for a few hours so I could go to my niece and other sister-in-law's birthday party that night. I never made it off the sofa.

The last few days have been spent trying to lay low and be sick so that I can recover sooner. Not working out as planned. After careful thought and consideration, I withdrew from the cast of the Shadow Box (still breaks my heart). I have a clinic appointment next week and since I don't know what's going on in my chest right now, I couldn't risk that they would keep me or change my regimen and have it totally throw off the play. Better to let them recast now. Still makes me so sad, though. I can't wait to see the play. The cast is awesome!

Anyhoo, you know that thing people say when they want you to chill out and slow down? It goes something like, "the world isn't going to fall apart if you're not there..." or something to that effect? Well, they're wrong. I took a half day off on Monday to just completely rest and recouperation. Know what happened? The world fell apart. Plans for Garrett's college graduation this weekend got off track, pageantry stuff keeps coming back to haunt me, emails started piling up, phone calls, laundry, the dogs, cockroaches, Rylie's grades...it just built up and then felt like it exploded in my own head.

And so, come Tuesday and Wednesday, and even today, I have been pushing myself. Not as hard as usual. I've made time to make sure that all of my breathing treatments are getting done on time, 3 x a day, which is way more than I can usually say. I'm a bad patient! And I've made time to read a little. I need to work in time for a nap! But that's not going to happen this week. Rylie has music tonight. And my parents arrive tomorrow. And we need to prep for Saturday! Winthrop University commencement is Saturday morning, and then we will be having Garrett's graduation party. Oh! And Sunday is Mother's Day. And! There's a city council meeting on Monday. And! Then I go to MUSC for clinic. And then! We have handbells and Girl Scouts! And then! We go to the Great Strides walk for CF.

It never ends!!

The funny thing is that I am actually trying to slow down. This is me...slowed down. It's insane, right? What the heck keeps me moving??

CF in the News Today....

I have been meaning to post a new blog for a couple of weeks now, detailing all of the things I have been doing lately. But doing all of those things has made me tired and frankly, when I have a few moments to myself I'd rather spend it trying to catch a catnap than blogging.

But, having spent the day mulling over some information that I heard on HLN this morning, and then read in detail in the Rock Hill Herald...I think it's time to dust off my soap box and start bitching again like I used to.

It seems that the world is rejoicing the fact that many "lesser known" genetic disorders and diseases such as cystic fibrosis and tay sachs, are declining. Is it because they are being eradicated? No. It is because of the higher rate of genetic testing done by parents either pre-pregnancy or early term.

This pisses me off.

I find this sort of reporting irresponsible. Many people have short attention spans and although they are reporting the information accurately, the average American isn't going to get that far into the article to truly understand what they mean.

Most people will look at the headline, skim through, pick up a few key words here and there, and will come away from the article with the notion that these diseases are on the decline! Yay! That means I don't have to worry about them anymore and I can put my money and efforts into something else. Like breast cancer--you know--the one that people are most likely to recover from and the one that still receives the most funding over any other type of cancer--the one that has an entire month dedicated to it while other deadlier cancers go unnoticed. October should be Cancer Awareness Month...all of them....and the companies who spend millions repackaging their products so that they are pink for 30 days so they can donate .25-.50 cents per box irritate me. Those same pink items end up on clearance racks in every store with no money donated after that. They would serve the cause better by writing a fat check up front rather than waste the product and resources just to make them pink.....bah.

However...je divague

I feel like I am in a good position to speak about this from both sides. On the one hand, I am the product of the two "bad genes" and have to fight CF every day of my life. On the other hand, my husband and I underwent genetic counseling before attempting to conceive a child.

At the time, he was in the USAF and we had excellent health coverage. I knew that I'd been blessed with a mild/moderate case of CF. I had already lost a brother and did not know if emotionally I would be able to deal with it if I brought a child into the world who was 10x sicker than I was. We talked it out--a lot. We spoke with counselors and also geneticists. We decided that if my husband was a carrier we would just get another dog. That may sound cold to some, but in my opinion it was a decision easier to live with than those mothers of old who would wait until the start of their 2nd trimester, have an amnio, learn that their baby had Downs and then choose to abort.

Most peoploe familiar with CF know that there are between 1,500-2,000 different mutations of the gene that causes CF. You have to receive one copy from each parent to have CF. Millions of people carry a copy of the gene and have the potential to pass it on. Of those genes that have been identified, when a person is screened, the labs only check, on average, for about the 100 most common. Your DNA is a long complicated thing and it would take ages and tons of money to check for every single marker. As such, it is possible to have a positive diagnosis as CF with only one named gene marker (they look at other things, too, like your sweat test results, family history, breathing tests). On my gene map, I have only one CF gene showing. It is a common one (the D508 if I'm not mistaken) but the other one is a mystery.

Because I have a mystery gene marker, even though my husband came back negative, there was still a chance of the baby having CF because perhaps he also had an uncommon gene like myself. It was pretty heavy stuff to have to wade through and I'm thankful for the doctors and staff at UNMH who helped us.

Ultimately, we decided to try for a baby. I thank God every day that we did. She is amazing, and healthy! Though, she is a carrier now, which means her children could have CF.

See, that brings me back to the news story. I don't want the world to stop trying to cure these disease because they've read an article that says they are in "decline." The reason they are in decline is because the people who are having the tests prior to pregnancy are choosing not to have the babies. That's not a milestone in curing an illness, that's out-of-sight-out-of-mind.

Would I have been guilty of exactly the same thing had my husband turned out to be a carrier? Absolutely, guilty as charged. I already said, if we thought the odds were great that she would have CF, we wouldn't have gotten pregnant. But, the odds were low enough that we were willing to gamble.

Everything in life is a gamble and there are no guarantees. And not everyone undergoes genetic counseling before getting pregnant. As I said, at the time Uncle Sam was paying for it, that's the only reason it was even an option for us. If we hadn't had the insurance (like now) we would have had to research and debate and pray and maybe ultimately flip a coin on it.

It's only been in the last couple of years that SC added CF to their newborn screening (the series of tests newborns undergo during their first 24hrs of life.) And even with prenatal screening, and even with newborn screening, do you have any idea of the number of adults diagnosed with CF every year who spent their whole lives slipping through the cracks? No family history so no outward need for the expense to test for it. Perhaps you have chronic bronchitis, asthma, IBS, diabetes, etc, etc. Or in my sister's case, you're "borderline positive" for CF. What does that even mean?

It's bad enough that when I'm trying to raise funds for CF that when people read the CF Foundation literature and see that it "affects 30,000 children and young adults" they scoff at me. "That doesn't sound like a lot to me."

Reality Check:

• Not all CF patients are diagnosed at an early age
• Not all CF patients are treated at CFF-sanctioned care centers, of which there are about 118 around the nation
• CF patients are tracked in a registry...by the CFF...based on numbers they receive from the care centers
• If a CF patient is not treated at a CF care center, most likely they are not part of that census or registry
• My adult CF care center diagnoses 2-3 new adult patients per year...those people were not a part of the previous registry...that's 2-3 per year in SC that need to be added to that number
• How many more in each clinic? In each state?
  

The actual number of CF patients in the US and in the world is probably staggeringly higher than anyone realizes. And the media claiming that the number of CF patients is in decline is so completely ridiculous and arbitrary to our cause.

Again, the numbers of patients being diagnosed has only dropped slightly and that is because of the small percentage of the population that can afford to have prenatal genetic screenings and who then choose whether or not to have the baby.

The patients haven't gone away....only the parents strong enough to take care of them. That's not a crime and I'm not disparaging them in any way (I nearly was one, remember). I just want to make sure that it is clear to the public that even though more families may be choosing not to give birth to people like me...people like me still exist and we still want to be cured...and we want the babies who are still being born this way to be cured...and we want to know that when it comes time for my daughter to think about giving birth she can put her focus on choosing names rather than on whether or not to abort due to the crappy genes she inherited from me.

The fight isn't over people.

the Banquet...

I had the cutest little black dress picked out to wear for the Leading Lady Banquet. They said it was "business casual" but that results in personal interpretation (there were women in everything from jeans to evening gowns.) It had been in the 60s-70s here all week. The morning of the banquet, however, I woke up to 37 degrees, dark skies, high winds and rain all day. So much for my dress! So much for my whole day, actually. I ventured out just before lunch to have my nails done and by the time I got back I was coughing my head off. I ate a light lunch and promptly coughed myself to sleep. I woke up at around 3:45pm, which sucked because we needed to be on the road by 5pm to head to Charlotte and make the banquet on time. It was a lot of rushing around and tearing the closet apart for something warmer to wear, but we managed to make it.

The banquet itself was very nice. It was like the meal was catered specifically for me: chicken and penne alfredo, baked ziti, and chicken francese. Yummy! We were given a bottle of wine from the sponser, Cambria. They did a presentation about each of the women and gave us an engraved glass plaque.

I know that I had every right to be there, but couldn't help but feel totally overwhelmed and out of place when I would hear all of the amazing things that these other women were doing. The cool thing, though, was that upon talking to some of them, they all felt the same way I did. None of us felt like we compared to the women next to us. It was quite humbling.

They gave special recognition to a Leading Lady that, sadly, had passed away back in August. She had cancer. But for the last however many years, she had started up and worked for a chapter of Flashes of Hope, a non-profit that takes professional photographs of terminal children for their families. It was so beautiful. Her family was there and her daughter accepted her award on her behalf. Glad I brought tissues!

The woman who was named Leading Lady of the Year was seated at our table. We'd had a great evening talking to her and were so excited when she won! And she deserves it! She owns her own real estate business and sits on the board for Habitat for Humanity. What makes her special is that every time she sells a home, she takes her commission (over $60k last year) and uses it to buy and build Habitat Homes in her community. Not only does she fund the projects, but she goes out and helps build them. She is currently making plans to build homes in Haiti as a relief effort. She's incredible!

It was a great night and I'm so thankful to have been able to be included among such fabulous women! Of course....my goal now is to attend again next year!

107.9 the Link Leading Lady Banquet

Heading up to Charlotte tonight for the Link Leading Lady Banquet. 107.9 the Link has a great program in place that recognizes and celebrates women in their listening area who are simply amazing. They come from all walks of life and each is very involved with some sort of community service and/or charity. People can go to the radio station's website to nominate someone, and if they are chosen, they get to be interviewed on the air by radio personality, Ramona.

Last fall, a friend of mine secretly nominated me. I got a call from the station just before I was admitted to the hospital. So, I came in and did my interview in late October after returning home. It was a lot of fun.

Then, we got an invitation in the mail to attend a banquet that will celebrate all of the winning leading ladies from throughout 2009. Garrett and I are looking forward to a dress-up, grown-up night out.

It feels so cliche, but you can't help but think, "it's just an honor to be nominated with such an amazing group of women..."