Tales From the Rose Garden

Don't Dream It...Be It.

2010-11-16T07:12:00.000-08:00

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...

2010-08-06T11:33:00.000-07:00

"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!

2010-05-07T06:46:00.000-07:00

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....

2010-05-06T13:56:00.001-07:00

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....

2010-02-17T11:45:00.000-08:00

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...

2010-01-23T05:58:00.000-08:00

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

2010-01-21T06:48:00.000-08:00

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..."

Day Six at MUSC 10/09

2010-01-21T06:10:00.001-08:00

First off...now that I wrote the words "the final countdown", are you sitting in front of your computer going "doo doo dooooo dooooooo doo doo doo doo doooooo"???

I had every intention of staring UP today but the night staff just ruined me.

I went to bed around 11:15. The nurse snuck in around 2:00AM to hook up an IV bag that is supposed to run for 30 minutes, then kick back over to the saline for the night. At about 2:45 AM the machine started beeping...and beeping....and BEEPING. AIR IN LINE...AIR IN LINE...AIR IN LINE. I wait, thinking surely the nurse who sits right outside my door can hear it beeping. AIR IN LINE...AIR IN LINE...I finally, for the very FIRST time since I was admitted, hit the call button. ( I don't like to hit the call button. I am very self sufficient. This isn't the Hilton and they are not my servants.)

"Yes?"
"My IV won't stop beeping."
"Ok."

At 3:09AM, I throw off the covers, rip the plug out of the wall, drag the entire unit over to the door and stand in the doorway letting the beep echo up and down until someone came up and turned it off. I thanked her, got back in bed. Ten minutes later, door opens, light turns on, it's my nurse coming to see what was going on with the IV. She notices that it never ran to begin with, resets program. She leaves.

3:20AM.

"Are you F*ing kidding me?!" I yell to no one.

My new neighbor across the hall apparently doesn't sleep well at night. He watches the tv louder than my father, if that is at all possible, and he, too, does not believe in the call button rather choosing to shout, "Hey....HEY. NURSE. HEY."

I fold my pillow around my head to muffle out the noise and eventually drift back to sleep.

5:59AM.

A nurses aid, or "tech" as they prefer to be called now. I don't care. They're all either RNs or CNAs to me. Anyhoo, she's out there, plugged into one of the mobile computer carts which happens to be plugged into the outlet in front of my door and she's flirting with a phlebotomist who is there to get blood from noisy neighbor. They are loud. Laughing, cracking jokes. "Nuh-uh, Fo'real?"

Once again, I curse into the darkness, get up, yank the cord from the wall, open the door. Neither of them pays any attention to me. I demand she get my nurse. After a few minutes my nurse arrives to say she was planning on coming in at 6:30 to hang my next bag.

"I thought you'd be sleeping now."
"Well, I'm not, so I may as well take a shower. Bring me a flush please and something to wrap my arm with."

By 6:45AM I have already been up, showered, gotten a cup of tea, and was dozing off watching Robin Meade.

The rest of the morning goes well. Meds arrive on time. RT arrives on time. PFT is rescheduled for today--in fact I bump into my CF doc and he puts my chart into my arms and allows me to walk it over myself, partly because waiting on transport could take forever. So I trek over to the next building to repeat my test.

12% increase over last time! Woot! Suck it, Gil!

I skip back to my room to eat lunch and meet with my CF doc. Not only does he give me the ok to go home, but he decides to forgo the home infusion which was giving us financial heartache and opted for oral antibiotics...the kind you find on the walmart list. YAY.

I text Garrett while he's in class at WU: Come get me NOW.

He bolted out the door and across campus, pulled Rylie out of school, went home to walk dogs. They got on I-77 at 2:15 according to the text I got from Rylie. It's about a 3 hr, drive, sometimes 3 hrs and 20 minutes.

They called at 4:45 to say they were 2 exits away from the one for the hospital.

Couldn't have made better time if they'd been using a transmit beam.

And so, I await the final paperwork and having my PICC pulled.

And I bid this place adieu!

Day Five at MUSC 10/09

2010-01-21T06:09:00.002-08:00

What can I say about Day Five? I mean, at this point, I'm getting repetitive, right? Woke up, ate, got meds, incompetence of hospital staff, blah blah blah. Rode the elevators some more. Went to the PT room and used their treadmill again.

Oh, that was a funny story. I think I was finally caught in a lie. Well, not a "lie" per se, so much as a non-truth. Some years ago my doctor insisted that I either get a treadmill or join a gym. It was cheaper to buy the treadmill. Over the years I used it less and less. And less. But every time I go to clinic they ask, "are you still exercising?" and I always answer "yes!" I do exercise, occasionally, but not in the traditional sense of the word. I feel that housework and dog walking and chasing around after my child constitutes exercise. But the test today didn't agree with me on that one.

As I get onto the treadmill a clip is placed on my finger to monitor my O2 saturation and my heart rate. My O2 sat was 98% and I don't remember what my heart rate was, but it was great. We turned the machine on, set it for 2mph to start, at about 5 minutes into my 20, my O2 sat had dropped to 93% and my heart rate was 136. YIKES. The other big test of endurance is to see if you can talk while exercising. Once upon a time, I used to do upper body strength training stuff while on the treadmill. And I'm famous for singing the whole time I'm walking. I could BARELY get through a string of sentences without gasping.

Proof is in the pudding, or so they say. It was obvious that I was not physically capable of that type of exercise. That is something that will absolutely have to change once I get home, I guess.

Did you know that "classic cheesecake" isn't that classic? It was covered in some sort of strawberry sauce that reminded me more of strawberry syrup from IHOP. (mmmmm...I'd kill for IHOP right now). And the cheesecake wasn't classic. In fact, it was barely edible. But I ate it anyway. Desperate times, my friends, desperate times.

Today's blog isn't as humorous as I would have liked. It was a blah kind of day. Every now and then in a person's life the pity party kicks into full swing. And it wasn't just me; it was the other 2/3 of my bubble as well. We've just reached a point where it's time to face some pretty harsh realities.

Garrett was feeling a little homesick for me and we were both struggling with the weight of financial issues. I told him being with me is like being with a superhero. I revealed my true identity to you, and you chose this, you chose this life, this adventure. If you can't hack the batcave, Katie Holmes, get the frack out. That made him laugh and say, "that's why she wasn't in the second film." We both laughed. The best part of it all is that he CAN handle the batcave. And we're in this together, and neither of us would have it any other way. Well....healthier and wealthier wouldn't hurt.

I miss Garrett. He's the Dante to my Randall. And I miss Rylie. I've told her time and again, I can't breathe when she's not around. The three of us are so codependent for one another it must be nauseating to the outside world!

Lots of Docs came by today. This place was like Grand Central Station. They decided to move my PFT up to Tuesday instead of Wednesday. Based on the results, they will begin discussing a course of action in regards to the IV meds. Usually they run a 14 day course. But I am wheeling and dealing with various case workers and staff to see if there is any way that I can finish it up at home as an outpatient someplace, rather than staying here another 10 days or so.

Then again, if I can manage to stay in past the 14 day mark, I might be able to eliminate two of my credit card debts. That annual protection plan thingy I got suckered into paying $90 for each year supposedly takes care of your balance if you are hospitalized continuously for 14 days or more. But is that worth me losing my sanity in here?

Like I said, I've got a lot of options and a lot of wheeling and dealing to do tomorrow. I've got to know when to hold 'em, know when to fold 'em, know when to walk away, and know when to run.

Geez! I'm bored enough to quote Kenny Rogers.

Oh, and I didn't get to stare up today. It rained. Bah. May take Kay up on her advice to approach a doctor in the lobby frantically and yell at him for not answering any of his pages. That could get interesting.

I've checked 5 on-call rooms, by the way, and none of them have hot doctors having crazy sex. The television lies. All these years, the black box has been messing with my mind.

Life's a funny thing, isn't it? We spend most of our time worrying or complaining about things, and hurrying through it all. But where are we rushing to? What's the end game? Bitch and moan, and then pray it never ends.

* shudders *

Whew! I think it's time for some chocolate cake and some Monday night shows. Far be it from me to get all philosophical on an empty stomach.

Oh, and staring at the cashier through the glass of the little shop like she's in a fish bowl is very unnerving to her.

Please let my PFT have improved when I repeat the test. And please let the powerball ticket I've been carrying around since Wednesday yield something. I'm stir crazy enough to start a "bucket list" and I'd much rather just go home and get back to nagging everyone.

Day Four at MUSC 10/09

2010-01-21T06:09:00.001-08:00

I debated not writing anything for Day Four. Day Four fell on a Sunday, and as Dursley once said to Harry, "There's no post on Sundays."

But it wouldn't be me if I wasn't rambling on incessantly about something...

Woke up later than usual, 7:10 AM to be exact. It was foggy outside, so no sunlight to assist in my waking. I was surprised that the nurses hadn't been in yet. Granted, there is a sign on the door telling them not to come in until after 7:00, but that hasn't stopped anyone yet. In fact, I rather liked it when they would hook up my IV bag at 6:30, as it runs for an hour. So I would eat breakfast while it was attached, when it was done I'd shower, then make my run for tea and be back before respiratory therapy.

I open the door to look for a nurse. I find one. I ask her to unhook me from the pole (I was still attached from my 2AM bag, but with only saline running at this point) so that I could shower quickly before being tied down for an hour. She told me no. I pushed the issue. She told me that if they did that, it would mess up my blood levels for the tobramycin since it has to go in exactly every so many hours. Seriously? If that were the case, then I should be all sorts of messed up, seeing as how the previous nurses were hanging the bag by 6:30.

I pleaded for a compromise. Disconnect me long enough for what my mother calls a "bird bath" and what Garrett and Robin call a "whore bath". Done! I was allowed the length of a Nascar pit stop to coat myself in baby powder and put on clean clothes before being hooked to the bag. Face washing, hair combing, and the like would have to wait until after the meds started. Bah.

After breakfast I debate if I have enough time to get tea. I take my chances. Not only did I have enough time for tea, but another episode of Doctor Who. My morning RT didn't show until nearly time for my lunch tray to arrive (in fact it did arrive as she was leaving) and to top it off, one of my meds was missing. This was a problem again later in the day when the RT was supposed to return between 2-3PM and didn't show until 4:30...as the dinner tray was arriving. Took the med, skipped the therapy, sent her away.

Boredom finally reached new heights. Literally. Ended up on the 10th floor "Charleston Room" which seems to be a secret room. Not quite the Room of Requirement, as food, drinks, and phones are not allowed. But it's clean, has leather seating, and windows on both sides so you get a great view of the city and the bridge.

Decided upon new tactic today. Abandoned the jim jam bottoms for some denim capris. Dressed like the natives. Wandered around for almost an hour like the civilians do. Hid my id bracelet beneath the sleeve of my sweatshirt. Notice I didn't say hoodie. It's a sweatshirt. Or even zip up jacket. When I was in high school, as Sharon, Michele, and Jenn will recall, it was my wubby.

I rode the elevators up and down, talking to the security camera. I wonder if someone is actually watching live, or if it merely records. Either way, as I stared at the ceiling and asked it where the escape hatch was, no one answered. I even pondered out loud, how I would reach said hatch should the elevator malfunction. I have no other person to step on. I might be able to get a foot onto the handrail, but then what? Still, no one answered.

I looked people in the eyes as we walked towards one another, never breaking my gaze, initiating a staring contest that they weren't aware they were involved in. I won, well, most of the time.

I would take it a step further by talking to them...loudly. "HI" "HOW ARE YOU TODAY" "BEAUTIFUL DAY, ISN'T IT"

It's amazing how this simple act of kindness unnerves most people. They avoided me like New Yorkers avoid each other on the city streets.

I went to the shop--I like a little shop. It was me and the cashier. No background noises. No muzak playing. Just me....and her. Dead silence. She watched me intently, waiting to see what I would buy, and making sure I wasn't stealing.

As I had no intention of purchasing anything, I made sure to stop and touch at least one item on every shelf.

EVERY SHELF.

I spun racks, I flipped through magazines. I smelled candles. I hugged stuffed animals. I made her very, very, very uncomfortable. This went on for what was probably the longest 8 minutes of her life until finally some man came in to buy a candy bar or newspaper or something. I took my leave then. Slowly, suspiciously. Then just as I passed through the doorway I turned back to the cashier and her customer..."THANK YOU! HAVE A GREAT AFTERNOON, OKAY"

Someone is going to have me committed, I swear.

I think tomorrow I may gown up, hang a mask around my neck, and head down to the cafeteria. If I continue to talk to people like I know them could I pass for hospital staff? Maybe I'll go up to someone and strike up a conversation as though I already know them, try to see if I can get them to feign politeness by pretending they remember me.

I'm definitely going to stand on the sidewalk and stare up.

That'll do pig.

Day Three at MUSC 10/09

2010-01-21T06:08:00.002-08:00

Woke up at 6:30 to a nurse on one side hanging an IV bag, and a nurse on the other side taking vitals and checking blood sugar. Someone finally put a sign on the door during Day Two that said "No Vitals between 11pm and 6am"--after this morning, someone wrote the number 7 over the number 6 in pen...and it wasn't me!!

Breakfast arrived. Only things edible were a so-so bowl of grits--definitely not a Jethro bowl from the Little Cafe--and a tiny banana nut muffin. Ahhh...banana. Managed a quick shower. Decided I had just enough time to hightail it down for a steaming cup of water to make my tea. Got back. Finished the muffin while it was steeping. Doctor arrived. And I'm not talking about David Tennant.

Doc asks, "Did you see the results of your PFT?"

"Yes, and I'm pretty pissed off about it."

"Why?" she asked. "Because the number was so low?"

"No. Because it was exactly the same as it was 48hrs before, but some idiot read the chart wrong and ordered another test anyway, and then the PFT department, who knew I'd just had the test, didn't bother to just print out the results or call someone and they ran the test again anyway."

Her eyes got wide. Her smile faded.

"I ordered that test."

Inside.....I laughed maniacally. Had I called her an idiot to her face?

At that moment, my CF doc walked in, following up on his promise from Day Two to fix things and check on me. First doc took responsibility for the PFT error, the one that I plan on making MUSC eat. CF doc and I visit for about an hour. All the while I know my cup of tea is growing cold. What a waste of a teabag.

CF doc explains typically they prefer to do a full 14 day course of antibiotics. I tell him "that ain't gonna happen." He offers up a repeat PFT on Wednesday to see if anything has changed, and then creating a new game plan at that point. I counter with, "what if the numbers don't improve? Then what? Do I stay longer to see if it will get any better? I can't stay here indefinitely. Or do we say that it must be where I'm at now, as far as lung function goes and just go home?" Cf doc and I go point for point, round and round, like haggling for a used car, or two lawyers working out a plea bargain. We sat in two chairs facing one another. Back and forth, calmly, intelligently. We agree to repeat the test on Wednesday, leaning towards a course of action I can do at home. I tell him, "take Sunday to think on it, and bring me your offer on Monday." He smiled. This is why I like this doctor. Communication, understanding, and willingness to compromise.

He leaves and I run for more hot water.

I steep the tea bag. Respiratory Therapist walks in. BAH!! Turns out she is originally from England, understands the importance of tea. Allows me time to chug what I've got.

We had a lovely time during therapy. I say "lovely" because it was a word she used frequently and it sounded...well...lovely. It makes me happy. I tell her of Rylie's affinity for using a British accent when saying the words banana or doctor. She is amused by my love of Doctor Who. We talk of fish n' chips and malt vinegar.

Lunch arrives at 11:30 and I am already into my DW dvds and bananagrams. Once again, I dominate. My other self just can't hack a good word game.

What to do, what to do.

Day Three was completely boring. Well, not totally boring. Well, somewhat boring, save for the excitement of my other neighbor dying. Yes. That's 2 in less than 24 hours. I ask if I can change units as this one seems to be bad luck. They laugh at me. I close my door and back away s..l..o..w..l..y.

I watched many, many episodes of DW. I noticed my elbows are dry ("moisturize me!!") I read my book some more (The Art of Racing in the Rain) Watched more DW. Laughed at the fact that the doctors around here are basically invisible, they never show up, at least not like you'd expect. In fact, my other "visitor" came a week early just to spice up my visit. And it brought along cramps and cravings just to make it all comforting and homey like. I feel special!

Very nice Brit returns for afternoon treatment. She notices I'm watching DW. Informs me of some other specials that David Tennant has appeared on recently. Fills my head with googling ideas to get me through the weekend. We talk of the wonder that was Tennant and Patrick Stewart performing RSC Hamlet. We laugh about Gordon Ramsey, How Clean is My House, more tea and lovely chips. I like this woman. Further cementing our powerball winning plans.

Dinner arrives. At 4:30. Who eats at 4:30. Perhaps it was dinner time in jolly old London town? 4:30. You know that means I'll be starving by...wait...NOW. I trek down to the parking lot scary cafeteria tent for hot water and snacks. I exit the building and am greeted by a wall of hot humid air, it literally made my throat clamp shut. How do people live in Charleston? The traffic is ridiculous, the humidity is awful. I just don't like it at all. I digress...

The area you have to traverse to enter scary tent is the campus smoking area. It is full. I make my way through the cloud of cancer and humidity and enter the tent. Tent is nearing closing time. There is nothing to eat in there. I buy--what else--a banana, get my hot water, and suddenly am very happy to have found Ocean Spray Cran Grape! Am happy again.

Exit the tent to discover it is now raining. Crap. Well, not actually raining crap. That was earlier in the day when I walked through a raging flock of pigeons reminiscent of the Birds. The hot water was worth it. But it was indeed raining and I was in my favorite flannel jim jam bottoms, which are a tad bit too long to begin with and walking in flip flops meant I would occasionally step on the heels. Yuck.

I spray the room with Love's Baby Soft, cause why not? It dawns on me that I have not turned on the television all day. Not once. Not even for a minute. That hasn't happened in ages. Decide to get on the internet even though it's hours earlier than I usually get on here. That's how bored I am. Looking to speed up time. Not working really.

My sutures are beginning to itch around my PICC site. There is major bruising. My arm still aches and has a radiating pain down through my wrist from when she hit a nerve while doing the procedure. In all the years nearly 10 PICC lines I've had, I've never had that happen. Not a fun feeling. I would not recommend it. Well....truthfully, it hurt and it was scary, but in hindsight it was sort of exciting and definitely got the adrenaline going. Had I known it was going to have such a residual effect I wouldn't have laughed it off at the time.

Is my arm hair getting longer? Or maybe it's darker. No, I think it's longer. Could it be both? Maybe I'm pale, that combined with the lighting makes my arm hair seem odd. Nah. My arm hair is changing.

I feel like opening my door and yelling, "Seven O'Clock and alllllllll's weeeeeelll."

Have you seen what they use to take dead bodies out of hospital rooms now? It used to be they'd throw a sheet over the corpse and wheel it out. Sometimes you'd see a standard issue zip front body bag. Nope. This looks like the top to a giant shoe box and it is wrapped in this black material of sorts that resembles a body bag. They take the big box top and put it over the bed. It's nuts! I've been surrounded by all things zombie in the last six months. World War Z, the Zombie Survival Guide, Zombieland, Supernatural 2 episodes ago, Smallville's most recent episode, etc. I have neighboring patients dropping like flies and all they can do is put a box over them? Dude! Use the bag! Zip that thing up! I hate to be disrespectful, but I mean, really. I'd like to think when I'm gone someone will at least secure me lest I come back to bite my family.

Did you know that dead bodies release gases? They do. They will move and they will moan and they will burp and fart. It's fracked up.

Uh-oh.

This place is getting to me. It's only Day Three and I'm showing signs of going psycho.

But really...they actually fart, it's true.

I wonder if the nurses would be mad if I slept with the dresser in front of my door?

Day Two at MUSC 10/09

2010-01-21T06:08:00.001-08:00

Day Two began around 12:30 AM, when the tech who came in was unaware that it's basically a standing order that CF patients are not to be disturbed from 11pm-7am. He was also unaware that vitals can be taken with just the light from the hallway...hence his use of the overhead lights all THREE times he visited me in my sleep.

By 6:45 AM I had given up and given in. Was dressed and even had makeup on by the time anyone came in to see me.

Breakfast tray arrives bright and early...and is the exact opposite of everything I had ordered. I ask for hardboiled egg, they give me powdery looking scrambled. Ask for a waffle, get an uncooked english muffin. Ask for tea, they give me coffee. Ask for orange juice, the give me apple. It's almost comical. I'm in opposite land. May use a different approach when I order for tomorrow. [sidenote: attempted to order breakfast a little while ago and get a recording that informs me dietary closes at 7pm. so tomorrow's food will be a crapshoot as well] I dined on contraband fruit loops and got some OJ from a nurse.

Respiratory comes in to do my morning treatments. We are interrupted by orders to have me rushed to the PFT lab for a test. Huh? Did I not just do this on Tuesday, hence the hospital stay? I go all the way over to that building. Take the test. The results are identical to what they had been less than 48 hrs before. Shocker. An undertaking that I'm certain the medicare people will love.

Lunch arrives around 11:30 and is not that bad, slightly identifiable. There is a salad and a banana that I stash for later--was glad to have had that foresight as dinner was nasty; enjoyed feast of warm salad and banana. The banana makes me smile.

Neighbor from last night finally passed. It was very sad. Entire...ENTIRE family was in hall crying. No...WAILING in pain and grief. Wailing began when patient stopped breathing and continued for about an hour until patient expired. Sat here with my lunch listening to last rites. Depression set in. Decided to go for a walk in search of tea. Got hot water from starbucks. Yay for tea.

Attempted after dinner to get more water from Starbucks only to learn that they close at 4:30 and are not open on weekends. Had to seek alternative means for hot water. Acquired it from scary food tent in parking lot.

At some point in late afternoon my CF doc stops in for a visit. I greet him with , "Wow! You DO exist!" He looks at me confused. I then explain to him that I had yet to see a physician. Actually, the doc who saw me last night for 8 minutes and at dawn for 3 had been nice, but no one else had been by. Not even when they were doing rounds on my floor. Doc and I had heart to heart. I rattled off my list of complaints and explained that if lines of communication aren't opened up soon I will take my suitcase and walk home. He said, "please don't do that." I wouldn't. I live nearly 4 hrs away by car and it was 92 degrees outside. My suitcase is heavy. It's full of cereal and Doctor Who dvds.

Have spent remainder of evening watching DW and playing bananagrams. I win every game. Have made a mental list of my favorite DW episodes from each season. Debated when to go for my next tattoo. Tried to determine how difficult working with fondant would be. Went to the gym and walked on treadmill for a bit. CF has its privileges. Cannot get a straight answer from anyone as to why I am here or how long I will have to stay. Would like to be home before the 14th. I have scouts that night and scene blocking on the 15th. Not to mention a family that I would like to go home to.

Heard a funny story. I was on the phone with Garrett while he was walking the dogs. He then goes to remove a package from the trunk of the car (he's new to multitasking and with dogs involved something was bound to happen). Just as he was slamming the trunk shut, Elphaba decided to jump in. Nothing like giving the man a heart attack. I had to laugh. You'd have to have spent time with Elfi to know the true humor of the situation.

Am hoping that none of my shows are being deleted from DVR. Am really worried about Kay. Curious as to how weekend will go seeing as how nothing will be open and most staff is off. Will have to find ways to occupy my mind for the weekend. Clicking my heels together isn't working and I left my broomstick at home. Am really, really worried about Kay.

Just got a call from Rylie. Now she is sick. Not sure if it is side effects from the flu shot she received on Wednesday morning, or perhaps she picked up something at the germ box they call middle school. I should be home being a proper mom.

Contemplating searching for roof access. Would be a nice place to hold private play rehearsal...loudly. Then again, singing in my room couldn't be any more disturbing than the wake in the hallway this morning. Perhaps a sing along amongst staff and patients? Any suggestions?

Day One at MUSC 10/09

2010-01-21T06:07:00.000-08:00

I went to clinic on Tuesday (10/6). They tell me I should be admitted. I drive over 3 hours home to break news to family, pack, pay bills, so on and so forth. I get a call on Wednesday saying that a bed request was already put in for Thursday morning and an appointment was made to have PICC line put in. I should arrive at MUSC between 11-12pm.

I arrive at MUSC at 11:10am.

I go to admitting. They don't know why I'm here. They send me to the department where PICC line will be put in. I stop at their admit area. They don't know why I'm here. It takes nearly an hour to get me into surg. area to get PICC line, where staff is already gowned up and pacing and proclaims, "there you are!!" when I arrive. Apparently, they knew I was supposed to be there.

After line is inserted they call 8th floor to find out what room I'm to go to. 8th floor doesn't have a room for me. They claim "she's at home waiting for us to call and tell her when one is available." Ummm...no I'm not.

I end up back in original central admit area. No phone service. Cafeteria under construction. There is a sci-fi looking decontamination tent thing set up in the parking lot subbing as a cafeteria. I have mystery meat and mashed potatoes for lunch at 1pm. Back to admin waiting area.

Wait. Wait. Wait. They take this area seriously....

At 5pm I get assigned a room. I go upstairs. Miss the dinner tray by five minutes. No food for me. Thankfully, sweet nurse finds me a ham sandwich and some pretzels. Another brings me a pepsi. I love them.

Am in room with nothing going into my PICC line. No doctors orders. I am the mystery patient. Eventually around 7:30, during my Brady Bunch marathon and dinner of pop tarts (this was prior to the ham sandwich miracle) someone comes and takes me for an x-ray.

Come back to room. Finally have doctors orders. Someone mistakenly puts in chart that I'm trying to lose weight and am on diet. Doctor tries to tell me I can't have my pepsi. I snap at her, "your cafeteria is gone. I drink tea all day like others drink coffee. If I am in here hungry, with no caffeine or sugar we will have a problem. You will not want me here." She looks at me funny. I am NOT on a diet. Yes, I discussed my unhappiness with my recent prednisone induced weight gain with the dietician on Tuesday, but the prednisone is stopped now, it won't take long for my metabolism to drop some of the weight. I wasn't inferring that now, while in captivity, would be a good time to try out the act of dieting.

Have finally begun to receive IV meds. Have just finished my first respiratory treatment (though it made me miss my 9pm shows. Was watching Supernatural, but switched to Grays because I don't care if I can't hear Gray's...they've already jumped the shark). Will now eat contraband Fruit Loops and Sierra Mist for dessert. Brought all 4 seasons of Doctor Who with me, may throw in a disc and attempt to get some sleep later.

Am missing my Rylie and Garrett terribly. And Caitlyn. And my puppies. Ok, wait....people in next room are singing. Not happy birthday, something else. Why are people singing? It's 10pm. In a hospital. Am in the twilight zone.

Can't wait to see what Day Two brings.

Tales from the Rose Garden: A Look at Life with CF

2008-04-21T13:04:00.000-07:00

Just a note to let you know that my project of over two years has been completed, Tales from the Rose Garden: A Look at Life with Cystic Fibrosis. Though not as long as I'd planned--I lost a lot of work due to computer malfunction at the end of the first year, and there were stops and starts due to illness--it is finished nonetheless. It is a collection of stories and poems written by CF patients and their families. I self-published with a company called LuLu, that I have used in the past when publishing my book, Grant Me the Courage about my brother's battle with AIDS. Proceeds from this book will benefit the Cystic Fibrosis Foundation. To view the book or purchase, please visit www.lulu.com/kerrimarks

Sink One for CF Disc Golf Tournament

2008-04-21T07:48:00.000-07:00

2nd Annual Sink One for CF Charity Disc Golf Tournament
Presented by INNOVA Disc Golf

Saturday May 17, 2008
Winthrop Lake (rain or shine)
Rock Hill, SC

$20 entry fee/donation

9:00 am sign-in, player mtg at the Shack
9:00 am "shotgun" start time for Round I
12-2:00pm luncheon catered by Firebonz All-American BBQ and Grill (for all paid participants) with live music by Loner Bill, and raffles/auction
Round II begins after lunch
Trophy presentation to follow Round II, with special guest Patti Mercer, Mrs. South Carolina International 2008

Trophies are presented for the high score in each category: Men's Pro, Men's Am, Ladies Pro, Ladies AM, Juniors (age <15). All ages and skill levels are encouraged to participate.

"Hole" sponsorships are still available for $100 each.

Every penny raised by this event will directly benefit the Cystic Fibrosis Foundation to help find a cure for this terrible disease.

Come throw some discs! Help save a child's life!

Our goal for this year is to raise $3,000. Won't you please help!?

For more informmation or to register online, please visit www.marksmanweb.com/65roses

But at Least I Still Looked Good...

2008-04-16T11:01:00.000-07:00

Recently, my sister was reading an article in a magazine about writing your own "7-word biography." Without batting an eye, I had an answer for her:

"But at least I still looked good."

I swear, I'm going to request that be carved into my tombstone one day. It's become a running joke in my family. If I had a dollar for every time someone looked at me and said, "but you look great," I'd be rich!

That is the problem with trying to explain CF to people. It is an invisible illness. I can remember eating in Taco Bell during 10th grade lunch and having "old" people give me grief about what they perceived must be my "smoker's hack." I've had people sitting in front of or next to me in the movie theater get up and move (that usually makes me cough louder and harder and aim it at them because I'm a sick twist like that). I've even had people yell at me in parking lots if I happen to use my handicap placard for parking (I guess if I don't exit my vehicle wearing braces or with the use of a wheel chair lift, I must be faking it and abusing the system, right?)

It's a commonality that people tend to fear what they don't understand. But it's even more common for people to disregard what they cannot see. Call it the "ostrich syndrome" or call it ignorance. Either way, it makes it difficult for a person with CF--especially for someone with a mild to medium case.

Typically, people react surprised and confused when they learn I have CF; mostly it's due to the fact that they've never even heard of it. But when I explain what CF means, they look at me bewildered and say, as though to comfort me, "but you look great."

Like most kids living with a chronic illness, somewhere around age 10 I learned how to work the system. C'mon, admit it...you know what I'm talking about. You learn when and how to play your trump-card. Some days you need to look a little sicker than you feel to avoid school or work or whatever, and other days you need to look better than you feel so as not to miss out on something else. I'm an expert in this department.

My mom got to witness my most recent experiment with the looking good phenomenon. I was sick as a dog when I was hospitalized last fall. I was admitted on a Monday, but knew my best friend from high school was flying in on Friday for a holiday weekend. What to do, what to do? Knowing full well that I would leave with my PICC and handle my own meds at home, I needed to guarantee an out. I spent Monday and Tuesday completely pale and sick and dirty and stinky. Wednesday, I showered and started the pretty process. Thursday added the tiniest bit of blush on my cheeks after that shower. And come Friday morning added the miracle that is black eyeliner and mascara. I told my mom to keep track of the reactions. No lie, within 30 minutes I had been told "you look great" by 2 nurses, a nurse's aid, the lady from dietary that took away my breakfast tray, and finally the doctor. Short story long, I was at the airport to pick up my friend and her family.

It baffles me, really, the idea of how having CF and looking good surprises people. There's this preconceived notion that in order for me to be suffering or fighting for each breath, I should weigh 98lbs and have tubes and tanks attached to me.

Well, I'm here to tell ya, that's a bunch of crap.

Sure, there are going to be days (like today) where I couldn't be bothered to take a shower, let alone spruce myself up. But sick or not, if styling your hair, or putting on a little makeup, or wearing cool outfit makes you feel good about yourself, then more power to you. It all goes back to the old saying "don't judge a book by its cover." People shouldn't judge others based on their appearance, or by how they cough!

So next time you see someone in the handicap space that doesn't outwardly appear to have any disability, don't assume the worst. They could have CF, or cancer, or lupus, or heart disease, diabetes, etc. Just because someone looks good, doesn't always mean they feel good. Again, quit with the assumptions and go ahead and ask how we are doing. Looks can be deceiving and sometimes we may need that opening to tell a person what's really going on in our bodies. And other times, we really feel as good as we look and would appreciate your asking why so we can share the joy.

For young or old, in sickness and in health, when living your life...look good doing it!

All About Me...

2008-04-16T10:41:00.000-07:00

My name is Kerri Marks (nee O'Connor). I grew up in Levittown, NY and graduated from Island Trees High School in 1991. I am the youngest of six children.

I was diagnosed with cystic fibrosis at the age of 7 at Nassau County Medical Center. Cystic Fibrosis (CF) is a life-threatening genetic disease that affects the lungs and pancreas that has no cure. Until age 19, I was seen at the CF clinic at Schneider's Children's Hospital at LIJ in New Hyde Park, NY by Dr. Jack Gorvoy and his team.

It seems as though I was sicker throughout elementary school and junior high than in later years. I spent 7th and 8th grades on home-tutoring. By 9th grade, my school absences started to slow down and I wasn't hospitalized again until 11th grade (spring of 1990). After graduation, I briefly attended both Nassau Community College and SUNY Farmingdale. During and after my high school years, I worked in various retail settings and as a waitress. In 1993, one of my older brother's died of AIDS.

In February of 1994, I moved with my parents to Fort Mill, SC. For the next two years I bounced back and forth between GP's and basically treating myself; self-diagnosis is a fine art. We were new to the area and the closest CF clinics were hours away. I trusted that I knew my own body better than anyone else--plus my mother was a nurse. We did the best that we could.

During that time, I attended Winthrop University and met the man who would become the love of my life. My husband had joined the US Air Force on a "delayed" enlistment program. It was early Fall and we knew that he had to leave in December for Basic Training. Our courtship was brief, but we kept in touch. I flew with his family to San Antonio, TX to see him graduate. Later, I drove to Biloxi, MS and lived out of the Balmoral Inn while he was in Tech School. That May 19th (1996), he came home to Fort Mill on a weekend pass and we were married at the American Legion. Our reception lasted for 4 hours, and then I had to drive my new groom to the airport so he could make it back to base before curfew. We didn't see each other again until that September when I flew to Texas to see him graduate from his next Tech program.

In October we were given our permanent station assignment: Albuquerque, NM. While we were in NM, I attended PIMA Medical Institute and earned my RMA degree and license (Registered Medical Assistant). I wasn't pleased with the standard of care I was receiving at the base hospital, so I sought care off-base at the University of NM Hospital. It turned out that UNMH had an accredited CF care center. From that point on I was seen by Dr. James and his team.

Due to the couple of years I spent without medical care, I had a lot of catching up to do. UNMH provided me with an electric handheld percussion instrument so that I could do my own PT when home alone. They got me signed up with the CFF Services Pharmacy and started me on some "new" meds including Ultrase enzymes and ADEK vitamins, and Scandical to help me put on weight. The UNMH team were also very supportive of the idea that my husband and I wanted to try and start a family. They set us up with a genetic counselor. After a few months of educating ourselves and screening and identifying genes, we got the greenlight to try and conceive. I became pregnant within the first month of trying.

My pregnancy started out rough. I suffered from hyperemesis--throwing up all day and night for the duration of my first trimester and losing nearly 10 pounds. That may not seem like a lot to most women, but for a CF woman, that's too much (it's so hard to put the weight back on). In my 2nd trimester, I was hospitalized briefly with pneumonia. I went home with my first ever PICC line and administered IV medications at home for weeks. My O2 sats began to drop, hovering between 80-85% so I had to sleep for a number of nights with the O2 monitor attached to my finger and start using Oxygen during periods of rest and overnight.

On May 29th, 1998, our daughter was born. In the end, I had only gained 17 pounds. I was completely drained. But our daughter weighed over 7 pounds and was extremely healthy. She does not have CF, but is a carrier.

In the fall of 1999, we moved from NM back to Fort Mill, SC. I decided after having received such good care in NM, I wasn't going to settle for a GP. I got set up with a local pulmonologist, but even that took time (insurance problems, referrals, etc.). By the time I became a frequent flyer with this doctor, I realized that he still had a lot to learn about CF. He wasn't familiar with most of my treatments. A typical appointment would involve him examining me, and then me dictating to him how the prescriptions should be written out. I finally decided that it was worth the nearly 4 hour drive to be treated at a real CF clinic. It took a few months to get the pulmonologist to write up the proper referrals and such, but eventually I was able to transfer to the Medical University of South Carolina in Charleston.

There are 3 CFF sanctioned clinics in SC--one in Greenville, one in Columbia, and MUSC in Charleston. Of the 3 clinics, MUSC is the only adult CF clinic in the state, treating upwards of 85 patients and diagnosing an average of 2-3 new cases per year. I am seen by Dr. Patrick Flume and his team. I drive down every 3 months and spend the day at MUSC for clinic visits.

Unfortunately, in the last few years, I've been hospitalized many times--1/04, 3/05, 2/06, 10/07, and 1/08--for what they call "tune-ups". It's not easy, seeing as how the hospital is so far away--3 1/2 hrs, and our daughter is school-aged now. I have family who have, since our wedding, moved to the Myrtle Beach area. So they help me out as much as possible on that end, while my husband's family lives locally, and they help out on this end. Dr. Flume is sympathetic to our situation and doesn't keep me for very long (the first visit he kept me for about 12 days, in order to do as many tests as possible and have a "base line" for future comparisons). Dr. Flume usually has another PICC line inserted and I go home after about 4 or 5 days, continuing my IV meds and treatments at home for a few weeks so that I can be near my daughter.

On May 19th, 2006 we celebrated our 10 year anniversary by having another "wedding" and renewing our vows with our daughter. We had about 70 guests, lots of great food provided by family, and a karaoke DJ--it was quite a night. We even had a Star Wars 3-tier cake (laugh if you want, but consider how we spent our 9th anniversary: He and I were both interviewed by the local newspaper because we were among the most devoted SW fans in the area and we both have SW tattoos. Our anniversary fell on the release date of SW Episode III, and our photos/story/tats made the cover of the paper). My daughter and my husband are what keep me going.

Over the years I have been involved in many different types of fundraising events. When I was younger, my family would always enter the CF Bike-A-Thon on Long Island, and I won the grand prize (for most money donated/collected) quite a few years in a row. They would give a brand new 10-speed bike to the winner. After the first year, I didn't need any more bikes, so I would always trade my prize with the 2nd place winner--which was always 3rd base box-seats to a Mets game. I have been involved in Bike-A-Thons, Walk-A-Thons, Dance-A-Thons, Motorcycle "Poker Runs", and even a "Halfway to St. Paddy's Day" dinner and live music event one November.

Unlike some other states that have multiple CFF chapters, SC only has one chapter and it is located in Charleston. As a result, most of the CF fundraising endeavors take place along the coast and near the two pediatric clinics (Columbia and Greenville). Living as close as we do to the NC border, some people choose to travel up to Charlotte and participate in events there, such as the Great Strides Walk.

For the last three years, I have been the organizer/chairperson/event director for the Rock Hill GREAT STRIDES 10k Walk for CF at Cherry Park. This year also marks the 2nd Annual Sink One for CF Disc Golf Tournament presented by INNOVA Disc Golf. For more information about these events or to register, please visit my website: www.marksmanweb.com/65roses

I am in the process of completing a self-published book compiled of stories written by CF patients and their families, detailing life with CF. All of the proceeds from any books I sell directly benefit the CF Foundation.

It is my goal to make sure that every person in York County, SC knows what CF is and that we need to continue to raise awareness and fight for a cure. If you want to help, you can sponsor me in the GREAT STRIDES walk by visiting www.cff.org/great_strides/kerrimarks

If you would like to learn more about CF please visit www.cff.org

My Theme Song

2008-04-14T18:02:00.000-07:00

"Superman"

by Goldfinger

So here I am doing everything I can

holding on to what I am

pretending I'm a superman

I'm trying to keep the ground on my feet

it seems the world's falling down around me

The nights are all long

I'm singing this song to try and make

the answers more than maybe

And I'm so confused about what to do

sometimes I want to throw it all away

So here I am growing older all the time

looking older all the time

feeling younger in my mind

And here I am doing everything I can

holding on to what I am

pretending I'm a superman

I'm trying to sleep I lost count of the sheep

my mind is racing faster every minute

What could I do more

yeah I'm really not sure

I know I'm running circles but I can't quit

And I'm so confused about what to do

sometimes I want to throw it all away

Controlling everything in site

I'm feeling weak I don't feel right

you're telling me I have to change

telling me to act my age

but if all that I can do is just sit and watch time go

then I'll have to say good-bye

life's too short to watch it fly

to watch it fly

So here I am growing older all the time

looking older all the time

feeling younger in my mind

And here I am doing everything I can

holding on to what I am

pretending I'm a superman

the Debut

2008-03-27T19:34:00.000-07:00

So here it is, my first foray into the world of blogging. Not that this is my first blog; no, I've been pecking away at the keyboard for years on myspace, ranting about this and that.

I plan on using this blog to talk about my CF. Caution: I'm long-winded.

No, seriously. In recent years I've discovered that the things I do to raise awareness can have an impact on the younger CF patients and families that I come in contact with. Why shouldn't my words do the same?

Each of us living with CF have more common bonds than mere faulty genetics. Our experiences help to define us. Our weakness gives us strength. We each have special gifts, and sharing them will help to deter us from the ever constant cries of "why did this happen to me?"

I'm a true believer in the idea that everything happens for a reason. If sharing my adventures with CF positively affects even one person, then I will feel like I have done something to make a difference, however great or small.