Tuesday, November 30, 2010

Just can't get enough...

Well, I made it past the Thanksgiving holiday and am now officially hanging out at ClubMed—my room with a view of Denver.  Thanks to the stupid cold I caught at the beginning of the month, I am back on IV’s again which is the third time in the past 5 months—it’s just wrong. 

I made my CF clinic appointment for the Monday after Thanksgiving since I knew if something needed to be done, I only had a two+ week opportunity to do it in.  I have my son’s college graduation on the 18th and I wanted to be better for that.  Waking up several times in the night with coughing spells and then seeing a mountain of Kleenex next to the bed was my first clue.  Then blood sugars rising despite prednisone reduction was my second clue.  But the charming third clue, being short of breath, forcing me to up my O2 about a week ago was the hardest one to ignore.
Sunday night I had almost convinced myself to call and cancel my appointment the next morning.  Maybe if I just waited it out a little longer, things would be okay since I wasn’t feeling as bad as I usually do before admitting defeat.  But then the “what if’s” started.  What if it gets worse before graduation and then I can’t go?  What if I wait and the bleeding starts up?  Yadda, yadda, yadda.  Then there was the I’ve-already-met-my-deductible-for-the-year factor to consider.  Even if I managed to suck it up for the entire holiday season, I would be needing help in January for sure and then be starting all over again on a new deductible.
Then clarity struck about 2:30 a.m. when a coughing spaz in the bathroom was making me feel light-headed but I couldn’t seem to breathe well enough to leave and get to the concentrator to turn it up.  By the time I could breathe better (relatively speaking) and could get to the kitchen to check my sats and up the O2, I was at 81% with a heart rate of 168.  Not so fun but it definitely pushed me off the fence.

My pft numbers at clinic were 26% down from 31 just a few weeks ago.  Yep, I’m toast.  I did think that maybe I could skip the admission but Dr. S convinced me that going in for a few days to at least get my levels stabilized would be a good idea.  Also since I had so recently been on drugs, she wanted to mix up my “cocktail” a bit and add a med that I had been desensitized to.  If I were hospitalized then they could administer it at low doses and work up to the therapeutic level.  Well, it made sense to me so here I am. So far the Tobramycin, Ceftaz, and Vancomycin are playing well together and the prednisone boost is opening me up. I'm all for hoping this will be enough, at least for a longer while.

Friday, November 26, 2010

I'm surrounded by turkeys,,,

Starting Out
Since winter weather cancelled our plans to drive over the river and through Wyoming to get to Grandma's house in Utah, Christina and I decided to take advantage of our long Thanksgiving afternoon and make a new culinary creation--CAKE POPS.    Armed with a book giving us step-by-step instructions and showing  fabulous pictures of what we could expect to create, we were ready to make our Thanksgiving Turkey pops.
Shoulda been easy, right???  Not so fast.

Not As Easy As It Looks
Okay, so you've got to get the chocolate to thoroughly coat the ball in a smooth manner and then poke broken pretzel sticks in the bottom for legs without popping the cake ball off the stick or touching the surface which will now become the not-so-smooth-anymore surface. Argh.

Disaster Strikes
There is a steep learning curve to this process.  The first few we made were less than stellar and I wanted to cry "FOWL."  These were supposed to be fun and easy.  Definitely not the greatest culinary project to choose if you are a perfectionist.  Luckily, I guess you could say, I had invested too much money to quit now so I forced myself to keep trying.  Christina and I decided that our turkeys might be "special looking" but hopefully  they would still taste yummy.
Feathers Are A Go
 With a few bodies now hardened, it was time to begin the embellishments.  The instructions stated to attach the candy corns on one at a time by holding each one until the chocolate you carefully put on each one became solid--kinda like chocolate glue.  Great, I could see 12 shopping days left before Christmas before this step was finished.  Thankfully, Rheid and Christina came up with a brilliant, alternate plan that was much faster but still effective.  Maybe we would get them done before our 6 pm. dinner after all.

In Full Production Mode
With me specializing in bodies and Christina focusing on candy corn feathers and whopper heads, we started to make good progress towards our goal of 42 turkey treats.  Since I am such a shaker, she was a much better choice for the detail work and she did a terrific job.

Our Flock Is Growing
A couple hours into our project, we can start to see the ending draw near.  Hallelujah!  Plus our turkeys are getting better looking with our developing skills.  I am ready to be done already.

Turkey Princess
Christina models one of her creations to put on her facebook page.  Hard to decide who is cutest, huh.

Champion Turkey Makers
Woot woot!  We are the Turkey Cake Pop champions.  I am sooo thankful they are done.  Now it's time to go celebrate with friends and eat the real thing!

I have so much to be thankful for and I'm grateful we set aside a day to reflect on those blessings.  Here are a few I've been thinking about lately.
  • Several families offered to let us celebrate the Thanksgiving holiday with them.  I am thankful for good friends.
  • A new little boy joined our extended family.  I am thankful for birth moms who make courageous choices.
  • My health stabilized this year.  I am thankful for good doctors and nurses who take care of me and for researchers whose talents bring new life-saving medications and treatments--and hopefully a cure someday.
  • We have a job during these tough economic times with benefits that bless our family.  I am thankful for a husband who works so hard provide for us, especially with the added financial burden that CF has become--he doesn't complain.
  • I am also thankful for:  my children, extended family, good books, clean water, freedom, my dog, Ancestry.com, oxygen, blue skies, my sewing machine, chocolate-covered orange sticks sold in bulk, fast internet, hugs, my ability to see and hear, Wii Fit, laughter, forgiveness, prairie dogs, smoothies, a soft bed, a good back/foot/head rub, reliable transportation, kind words, and my testimony of Jesus Christ.  Yes, I have a lot to be thankful for.

Friday, November 12, 2010

Beginning a 12-step program...

"Hi, my name is Sherri Schloss and I have CF."

I know you probably wouldn't expect it of me, but I've been told by my doctor that I needed a new way of doing things and a 12 step program should do the trick. I went to National Jewish to give it a trial run and even the respiratory techs thought I would benefit greatly. So I made the plunge and signed on the dotted line thus committing myself to the program.

Yes, no more early 1990's technology for me. Out with the old ThAIRapy Vest and in with the newest hi-tech gizmo for airway clearance, the inCourage system. Woot woot!

My new wear-me-for-an-hour-everyday friend has a built-in 12 step program that delivers pulsating pressure at varying velocities. It has a completely different feel to it and hopefully it will be more effective in airway clearance. I need something to make a difference.

I've never been particularly good with a airway clearance. My mom would do postural drainage (layman definition: getting beaten on your sides and back while laying down on a slant board with blood rushing to your head) when I was sick for sure, but not on a daily basis. It didn't make my cough more productive so it seemed to be a huge waste of time. My mom thought running around doing "kid stuff" was more helpful in the long run--bless her, she was right on.

Then when I was in college, I ran around like a crazy student and still didn't do chest therapy unless I caught a cold. I taught my roommates how to beat on me with cupped hands on a slanted ironing board we wedged under the couch cushions. Can you say uncomfortable? Evie, my main roomie-beater, was such a good sport about helping me out.

Then I got married to a wonderful guy, Rheid, who happened to be a drummer! Match made in chest therapy heaven, right? Yeah, he was great at it but therapy didn't allow much creativity in the rhythm department so he found it terribly boring. Who wouldn't, really. But he persevered and beat his wife on a semi-regular basis until the vest came along.

I thought the vest at first was my ticket to chest therapy nirvana and I used it with gusto, that is, until I couldn't tell it was doing anything but rattling me senseless. I really wanted it to be effective but whether I used it or not, it didn't seem to make much difference. So my compliance dwindled over the years. (I did check the counter hidden on the bottom of the device today and it calculates I've managed to log on over 1,240 hours of vest time over the years...in 15 minute increments, incredible!)

On a fun side note, my vest came when Josh was in the third grade. When his friends came over, Josh would tell them about his Mom's new "spacesuit thing." Everyone wanted to try it on. I remember all the giggles and laughter coming from my room as the little boys would turn it up to the max to hear themselves talk and sing with a crazy vibrato. They loved it. I even used to do a Pinocchio impression saying, "Father? Father?" and sounding like I was underwater looking for Geppetto. Good times. However, I will not miss hoses flying off when I cough hard or having to keep pressure on the activation pad because if you eased up at all, the timer would start from the beginning again--argh! I also think I've passed up the "if you die, we want this machine back" clause since this original company is now out of business and the machine is completely outdated as well. Way to outlast the vest Sherri!

But now airway clearance is serious business and I need something that really works. My x-rays show lots more congestion and "plugging" so I need to get that mucus moving. My best treatments were when Rheid did them, but he has been out of commission for the past 2-3 years with shoulder problems and surgeries. Flutter valves don't work either and pep masks give me a gnarly headache but not much else. My doctor mentioned this new system that her women patients particularly like since it is much more comfortable up front in the chest area. My worst area is also in the front right, so having better access there is potentially beneficial for me.

I've had my inCourage for four days now and I've put 4.5+ hours on it already. I managed to catch a bad cold last week so I am coughing more during my treatments-- so not sure if inCourage can take all the credit for increased coughing and mucus movement (sorry, but CF is all about mucus after all) but I am enCouraged!

Monday, November 1, 2010

Goodbye old friend...

Feeling a bit nostalgic today saying farewell to a long time friend. We've known each other since the early 1980's; so in our almost 30 year relationship, we have been through a lot together. You could say we've been practically inseparable. In many ways this friend literally changed my life. Because of this new relationship, I was emboldened to try new things. I began spending less time just sitting around by myself and complaining. My relationship with my parents even improved because of my new association. Life became better. So it is with deep sadness I bid goodbye to my porcine-based friend, Pancrease. I will miss you!

It is time to move on. Forge new relationships that have the FDA stamp of approval. Become one with my new new-age sounding buddy, Zenpep.

Really, who names their newest drug creation Zen-anthing? I feel like should take a moment of silence to center myself before swallowing those bad boys.

I am kinda excited to get a new "look" to my cocktail of medicines. I remember thinking the enteric-coated balls were sooo cool when they first came out--very high tech. But they are so last decade now and a new sleek yellow and white design will be much more hip. And I am all about hip! All I can say is, these new hummers better work.

Pancrease was the miracle drug that saved me from the debilitating stomach cramping that I experienced growing up. The old-school Viokase and Cotazyme were better than nothing but just barely--not to mention their horrid taste and smell. Even if I never skipped/missed a dose, I would still suffer. Who wanted to swallow 16-20 of them before eating and then still end up with a stomach ache? Not me. I spent so much time in the bathroom during elementary school, my teachers would send a runner to the restroom just to make sure I was still okay. Food and grease would literally come right through me, twisting my insides into knots as it did so. Yes, those were the days. (True confession: My mom would dutifully send a grundle of pills for school lunch for me and I would stuff them into my empty milk box when I was done so people wouldn't watch me take them. Bad cyster!)

I went into slight mourning a couple of years ago when the general "Pancrease" was discontinued and I had to choose an MT strength. I had tried the MT versions when they first came out and my body didn't like the concentrated form as well. I finally ended up on Pancreacarb but nothing worked as well as my old 1980's buddy.

Ode to Pancrease
Amylase, Lipase, and Protease,
Supplied by you to me;
You gave me needed nutrition,
From the bathroom, you set me free.

Derived from my pig brothers,
Your enzymes did mine restore;
Goodbye my GI buddy,
I'll miss you forever more.