Good times in December...

 What a crazy holiday season this one has been!  Since I wasn't feeling well through the beginning/middle of the month, I was super behind in the whole Christmas experience.  I finished off my IV's in Utah on the way to see my son graduate with his B.S. degree in Communications from BYU-Idaho.

Joshua's 2010 Graduation from BYU-Idaho

Proud Grandparents

My parents and in-laws made the trip as well and we had fun hanging out in our hotel together.  Rexburg was super cold  (they lovingly call it Iceberg for good reason) and I was worried it would be hard to breathe but I was blessed--no problems at all.  They held commencement in the new BYU-I Center and it is a beautiful facility.  Afterwards we helped Josh move out of his apartment and started for home.  The weather had other ideas however so we opted to spend an extra day so we could travel through Wyoming in the daylight hours.  We had some hair-raising roads periodically but it could have been much worse.  Had we not left when we did, we would have been stuck for several days because of snow storms and closed roads.

Once I got home, shopping started with a vengeance on Monday morning, the 20th.  I have never been so unprepared for the holidays before. But with some online help and determination, I had things all purchased two days before Christmas.  Rheid and I had a marathon wrapping session that night and finally the Christmas tree didn't look bleak due to an extreme lack of presents.

Reindeer Production Crew

Then it was time to make neighbor/friend treats.  Not learning my lesson from the turkey cake pop incident, I decided to make reindeer pops on a mass scale for distribution.  Luckily I enlisted the family to help since time was getting short.  The professionals sure made the sample reindeer look good and easy in the pictures.  Ours, on the other hand, looked like they came from The Island of Misfit Treats.  Some of them looked rather dubious but they did taste fantastic.

Mom made us do this.

The annual Christmas letter still has yet to be written or sent--just not feeling it this year.  Maybe I'll get around to a New Year's letter, who knows.

Santa brought me a Nook ereader and I've had fun trying to figure out how it works.  Next I need to learn how to find free books to download!

Now on to 2011!

A right jolly old elf...

Today I got to do one of my favourite things...going to see Santa Claus...with two of my favourite little people, Maggie and Max.  A local business hosts Santa for their clients to come visit.  And this isn't your regular store-type Santa, this Santa rocks!  He is real from the tip of his white, wavy beard to the bottom of his big, black boots.  His plush red suit covers his round belly and makes his lap look snuggly and inviting even to this 45 year old.  Not only is he authentic looking but this Santa does magic, tells stories, and laughs with a deep "HO HO HO."  Two month old Max took all the fuss in stride and 4 year old Maggie was hesitant but brave enough to climb on up.  Too cute!  It was so fun to watch the varied reactions of the little children and it helped me remember some of the magic of the season.

Things are going along with the IV's.  I'm just feeling really mediciney and shaky.  The home health nurse came by on Thursday to take blood for a random Vancomycin level and creatinine.  Took every ounce of patience I had to be nice after the 6 tries, count them 6, it took for her to finally get a working vein.  Home health nurses are frightening on so many levels.

Got to get feeling better quick cuz there is shopping that needs to be done and time is getting short...Santa can't do it all by himself!

Home again...

I got to come home last night.  It was an all day process to get my home IV meds delivered to the hospital and then get checked out.  Found out the day before I left that one antibiotic the doctor wanted me on somehow didn't make it to my orders--I was on three instead of the four that was planned.  So they started the fourth drug at home instead.  I didn't want to stay one more day to figure that one out; I'd just deal with it all at home thank you very much.

The most frustrating part of this hospitalization (there always has to be at least one annoying thing--it's the rules) happened to be my eyes.  I had my yearly eye check-up, like the good little diabetic I am, just two weeks ago and diabetically speaking, my eyes were great.  But the eye doctor noticed the cataracts my eyes started to grow two years ago were still progressing--thanks again for giving, prednisone.  He said if they weren't giving me any problems then we would just check them again next year.  Sounded good to me.  I occasionally notice strangeness in my vision when I am looking far down the road while driving and at random other times but it's not so bad.

Well, fast forward to the second day in the hospital when I notice that things seem a bit blurry with my contacts in.  I chalk it up to dryness and hospital air.  So I was thinking when I put my glasses on for the night, things would be better.  Not so.  It's like someone took my glasses and put a different prescription in them.  I couldn't see the television clearly and then when I decided to read before going to bed, well, the pages were all a blur.  Squinting didn't even make things legible.  Crud.

When I mentioned the problem to my CF doc, he said that when I got off the IV steroids, it would probably resolve itself.  Comparatively speaking, my steroids were low this admission but I dutifully waited until the IV steroids were discontinued before becoming too alarmed.  Now call me alarmed--or maybe aggravated would be a better word.  It hasn't gotten any better and I'm only on 32 mg of oral medrol.  Tomorrow I need to call the opthamologist for another appointment to see what's going on, literally.  Getting cataract surgery was not on the top of my list of things to do over the holidays, but is it ever frustrating to not see right.

On the bright side, I am breathing better and the meds aren't making me feel uber yucky.  For that, I am thankful.  Also slept well last night, ahhh I love beds that don't have any mechanical abilities.  :)

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 18^th 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.

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.

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!

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.

A Scarlet M...

The other day I got an invitation in the mail; it was from my CF Center. The invitation was for a Patient Education Night. I used to go to these at the University of Utah all the time--I loved getting all the free samples and vendor stuff. This is only the second one I've heard of in this area since we moved here and I was unable to attend the first. I was especially excited when I noticed who the Keynote Speaker was--Isabel Stenzel Byrnes.

Isabel Stenzel Byrnes and her twin sister co-authored a book entitled The Power of Two: Twin Triumph Over Cystic Fibrosis. Both her and her sister received double lung transplants a couple years ago and I'd read about their story on the internet. Isabel's topic is one I could really use right now, "Finding the Power to Fight CF." I was so excited--that is until I read the fine print.

At the bottom of the invitation in eensy weensy type is the following disclaimer: We ask that patients with MRSA and/or B Cepacia do not attend. For some reason this has hit me sooo hard. I've become one of THOSE cfers. An outcast. It's not enough that my medical charts and hospital bands freely advertise the fact that I have MRSA and that my hospital room door is plastered with enough contact precaution information to scare the bejeebies out of any potential visitor or even passer-by for that matter. But now even among misfits, I'm a misfit! (Shout-out to Rudolph and the Island of Misfit Toys dwellers.) This stinks. I mean really stinks.

I guess (I'm kinda thinking out loud here) this bothers me because I've known for a long time that b. cepacia is one bacteria cfers never want to get. It's bad. Once you get it, it's like turning cf on to hyper-drive. No healthy cfer wants to be anywhere near someone cultured with cepacia. Well, I guess you can add MRSA to that list too. I might as well be walking around with a scarlet M on my chest.

You would think after my MRSA debacle of 2009, I would have figured this out on my own. MRSA is bad. For heavens sake, I've been on non-stop antibiotics ever since picking up this lovely staph bacteria. But denial is powerful. Until I saw it in print, I could make excuses for my body's bad behavior.

So my reality check has thrown me off for the past few days and I'm sure that the prednisone isn't helping the situation either. Somehow I need to recreate my space in denial-land so I can keep moving forward and feel hopeful. Somehow I need to make that scarlet M a badge of honor instead of a mark of weakness. It may take me a little while longer to make the transformation, but I'm working on it. Still wish I could go to the meeting...

Welcome to the world...

He's here, FINALLY. Meet my new nephew brought into this world by a beautiful mother and brought into this family by the miracle of adoption! Little BIG guy Larsen was born last night at 9:11 p.m. weighing 8 lbs. 10 oz. and measuring 22 inches long. (name still to be determined)

Plan for today: Hug the stuffing out of him and his birthmom! So excited.

Editor note: After much deliberation, his name has been officially decided: Max Elliott Larson.

I'm a low--ri--der...

Well, I survived my 3 hour clinic appointment: a PFT (pulmonary function test), two separate blood draws (yep, that didn't work out so well), visit with endocrinologist, visit with study coordinator (didn't qualify for any), a bone density scan, and visit with CF doc. Whew! My FEV1 (forced expiratory volume in one second) was 31% which wasn't bad but wasn't good. I didn't technically lose any ground but I'm also still on 60 mg of prednisone so I was hoping for a higher score with 'roids on board. Guess not.

Gratefully, Dr. S thought I sounded MUCH better than the day I was admitted and agreed the IV's could cease and desist. I didn't even have to lobby too hard. So this morning I finished my last dose and pulled the needle. It always feels amazing to get the dressing off and be able to shower without plastic wrap and a mile of incredibly sticky tape. I get to start on oral Zyvox tomorrow for the MRSA control so there is no rest for the yeast control efforts but oh well. If anyone has found anything to be effective in that department, I'd love any new ideas to try.

Yesterday I brought along my meds hoping that I'd actually be home before I needed to start them however. But by the time I was done with the appointment, I was already an hour behind. So I zipped out to my Beetle and began to set up an IV drip line. Yep, using my best sterile technique efforts and a mangled wire hanger, I managed to turn my VW into a mobile medicine delivery system. I was so proud. Too proud.

It was already after 4 and I hadn't had any food since breakfast. Should have thought of that before starting the IV, right? Well, I decided maybe I could do a drive-thru and not have to walk into a food establishment holding a deranged metal hanger above my head. Yeah, good plan. So I'm off down the road to Good Times for a burger and Spoonbender. I am now in a huge time crunch. But I decide at this point to sit in the parking lot and eat to be less of a traffic hazard; since yes, now I'm officially in the time of day to be a part of the Denver rush hour traffic scene. Not for the faint of heart let alone hands full of food and one eye on a slow and steady drip.

I must make mention here that I am also not in my preferred driving mode which is preferably above the steering wheel. In order to get enough gravity distance to get a steady drip, I had to ratchet down the seat to a depth I didn't know it even possessed. I looked like one of those scary little old ladies who can barely see over the dashboard. Yikes.

I'm on the road again trying to decide which of two possible routes would take the least amount of time and which merge did I want to sit in when I thought to take a look at my gas tank. Oh joy. I am one blip above my red bar of doom. When my car beeps a warning at the top of the red bar, my gas tank level drops like a rock. Well, now I have two choices: I can either stop at the next available station and figure out how to pump gas while doing my keep-hanger-above-head act, or I can test my luck and pray that I-25 is not a parking lot and I can get through the worst of the heavy traffic before I have to stop to change out the IV for round two at another gas station. I opt for plan b--go for it.

I must mention here that my little Vortex blue Beetle has been having a couple of issues lately, one of those problems being the blinker system. The blinkers are totally possessed. They will blink once or twice then either stop outright or do this Tourette-like stutter and then go bonkers. Usually it makes me giggle but its not exactly what you want blinkers to be doing while attempting numerous lane changes at high speed with bumper to bumper traffic.

At this point, my situation feels rather ridiculous--I'm kinda laughing on the inside but I'm also wiping sweaty palms on my pants from the stress. I'm doing drugs, looking like a low rider, being barely able to see out, having not enough gas, signaling like a spaz. Do I get street cred for this?

Happy to report I was actually near an exit about half-way home from Denver when my low gas signal buzzed and my drip came to a close. Couldn't have planned it better if I had tried (I guess I actually did try, didn't I?) Set up my second IV which was a nice, discreet pressurized ball. Filled the tank. Made it home with ten minutes to spare before my next meeting. Gotta love it.

A week in the rearview mirror...

Well, it's been a long week for me. I've been glad to be home even if its been a bit exhausting. Still feeling the weakness of the hospital stay combined with the high steroid shakiness makes it hard to function very well. But I've managed to pull off a few highlights despite it all.

We are all still on baby countdown for Mike and MaryAnne's little boy. Since he was due on Sept. 26th, I was reluctant to go into the hospital and miss out on all the excitement. Well, turns out it was a good thing I didn't wait for him to make his appearance, the little slowpoke. The baby shower/brunch went on ahead anyway on Saturday and the baby was there in attendance, albeit in the birth mother's tummy. Chelly decided to come to the shower and it was so fun for everyone to meet her. With the help of Maggie, the three of them opened the gifts together and it made for some very tender moments. It was so cute how excited Maggie was about baby clothes and "Little Guy" Larsen will be stylin'. Word on the street is the doctor will induce on Thursday if things don't get going! Yippee! Carolyn extended her stay here since she hasn't got to "help" with the baby yet...so that's been fun too.

We've been working hard on Bob's campaign all week. I've made fliers for our "What About Bob? Tour" which starts tomorrow. We are bringing Bob to the masses! Well, that might be putting it a bit strong but we are trying to put together neighborhood meetings in all our important precincts. Besides planning meetings and website updating, Rheid has been decorating a motor home for the tour with banners, posters, bumper stickers, and general red-white-and-blueness. Hopefully we get a big enough turnout to justify all the work.

One of the best parts of the week was a visit from my cousin, Lynne. We haven't seen each other for at least fifteen years we decided. She lives in Seattle and traveled out to Denver for training classes. Lynne made time in her busy schedule to drive here just to see me and it meant so much. I loved hearing about her little family and just catching up. Family bonds are amazing.

Tomorrow I go to clinic. Hopefully they will agree with me that IV's should be discontinued. I've noticed quite a difference in my breathing the past two days dropping from the IV steroids to oral ones. I am definitely tighter but I want to decrease the dosage anyway just to feel better. Who knows. Christina started a sinus cold on Friday and I've tried to stay away from her as much as possible. Go little suppressed white blood cells, you can do it!

Heigh ho, heigh ho....

Heigh ho, heigh ho, its back to home I go! I finally checked out of my Bed & Breakfast private room this afternoon--eleven days of fun and frivolity. But lucky for me, the fun just keeps on coming. I am going to do another full week of antibiotics and solumedrol at home. Oh joy and rapture.

One thing about hospital visits that always surprises me are the mixed emotions I experience coming out. I hate to have to check myself in but then I have this weird part of me that is always reluctant to leave. I guess it's a security kind of thing--if something goes wrong, they know how to fix it.

But then a part of me also knows that they really don't know how to fix everything or even if they can in some instances. Like when I started to bleed this week and I pulled the cord for help. Nurses came. Residents came. Six people in my room not knowing what to do to make things stop.

I could say that luckily for me, the bleeding subsided on its own--but luck had nothing to do with it. When the all too familiar sensations began and I knew I was in trouble, my initial panic was replaced with a comforting calmness as I prayed to my Heavenly Father for help. Help to make the bleeding stop. Help for me to feel at peace. Help for the medical team to know what treatments would be most effective. Help to continue on.

I am grateful for the help I received throughout my stay. I had good nurses who made me feel comfortable because of their efficiency and skills. I had amazing doctors who listened to me and my concerns. I had supportive family members and friends who visited or kept in touch. I had state of the art medicine and equipment to give me the best chance of healing. I had a loving Father who watched over me and blessed me.

Mission accomplished….

Today I went on a reconnaissance mission for sustenance. I decided to request a food voucher to use in the main floor cafeteria. It is one small perk that CF patients get here. Since patients order their food from a limited menu each day, long-termers (such as CFer’s) get pretty tired of the same old fare day after day. And since they want us to eat lots to keep our weight up, it’s a way to get more variety and hopefully something will look appetizing there.

So with IV pole firmly in hand and oxygen tank trailing behind me, off I went to secure some lunch. Getting me and my medical “wing men” into the elevator is no small feat. I need to enter, turn around, and reach for the buttons all while trying not to lasso myself or any other unwitting passenger with my hoses.

Once I’m there, my next problem becomes how to throw a sizable cafeteria tray into the mix. Uhh, not happening. I opt to use my balancing skills and pole to my advantage and manage to come out of there with a mini pizza, salad, chocolate milk, bag of cashews, and bag of caramel popcorn (as a low blood sugar backup snack.) Woot woot.

Then I get the brilliant idea that since I’m out and about already, I may as well take my provisions outside to the patio to eat and get a healthy dose of vitamin D. Here I had to ask a gentleman to help me with the heavy door. He graciously leaves his chair by the door and holds it open for me. After thanking him profusely for his assistance, I scurried over to the nearest table because the cobbled pavement was not making navigation very easy.

After setting out my food, I realized something I should have noticed earlier…it was hot!! Holy cow. The same sun which had lured me outside was now melting me into a little medicine-filled puddle. My pride wouldn’t allow me to gather up my food and try to retreat back into the cool confines of the cafeteria—plus I’d have to go through the same door where the gentleman was still sitting who helped me out there in the first place. Shoot! I was just going to have to sweat this one out. The 85 degrees sure felt hotter with the cement reflecting the heat but I got my fresh air and sun fix.

I am now safely ensconced in my room with no desire to attempt any more high adventures today. I am armed with snacks. Mission accomplished.

It’s my prerogative….

Since it’s a woman’s prerogative to change her mind, I exercised mine and checked myself into the Bed and Breakfast on Friday afternoon. Got a room with a view but that’s about all it had. My television displayed a remarkable resemblance to Close Encounters of the Third Kind—fuzz and static. My dear husband jiggled with the cords and managed to get most of the channels viewable. Yippee for technologically smart spouses! Every nurse, respiratory tech, and CNA thought they knew and could fix the problem but no one was successful. Finally maintenance made an appearance the next day and now all is well in my bed-potato world.

When it was time to order my dinner, I realized I had no phone. At first I thought I’d lost my mind because who forgets where the phone is, especially when you’ve spent as much time in this place as I have. Yep, since a phone call equals room service (and I use that term liberally) there was no way to talk to a “nutritional assistant” and get my 45 minute wait for food started. Argh.

While waiting for my dinner delivery, I decided to get out of the room and take a leisurely stroll around 9th West. My IV pole had a totally different idea. Just like my uncanny ability to pick out the spastic cart at the supermarket, I found myself saddled with a less-than-stellar IV pole. Trying to move this thing along the carpeted hallway while simultaneously pulling an oxygen canister behind me would have been comical if it wasn’t so stinkin’ hard to breathe. With this thing dragging me down, I envisioned myself becoming “The Hermit of 914.” Luckily the next day a terrific nurse hijacked a made-in-this-decade pole saving myself from a sequestered existence.

Just when I thought I’d discovered all the deficiencies of my room, darkness came and I found out I had no control over my source of light. For some reason my bed controls were not working properly and I couldn’t turn my lights off or on. Come on. Was the last resident of this room deaf, blind, and comatose??!!

They’ve put me on a 3 drug combination: vancomycin, tobramycin, and doripenem. Because of my recent vanco “red man problem,” I am continually attached to my IV line. No time off for good behavior.

Now I must say my behavior was exemplary until this morning. I woke up about 7:15 a.m. with a twitchy cough. Five minutes later my lungs were bleeding. Scary. I’ve never managed to display my hemoptosis skills while being an inpatient before. I was hoping to make a speedy exit from this place and continue the fun at home but that isn’t looking too good at this point. Now they’ve upped my prednisone to 120 mg per day and I’m in for an emotional rollercoaster ride—gotta love how steroids mess with your brain chemistry. Hanging in there so far.

It's a love/hate kinda thing...

I love Fall! The cooling temperatures are a welcome relief and the changing colors are dazzling. Home grown tomatoes finally ripen and a part of you can actually believe they might be a fruit after all. The most wonderful time of the year--Fall.

I hate Fall! "Flu shots now available" signs everywhere I look. Public gathering places teeming with germs. Avoiding grocery aisles where fellow shoppers hack and sneeze--giving myself whiplash turning my cart around so quickly and trying to only breathe out till I've exited the offending aisle..."Bacteria clean up in aisle 7 please!" The most aggravating time of the year--Fall.

Most of my life I could gauge how my winter would be by how things went in the Fall. If I managed to make it though the season relatively healthy, I could look forward to a decent winter. But if I caught something, hold on to your bobsled because I was headed downhill probably until Spring.

Well folks, yesterday was the Autumnal Equinox and to celebrate my lungs decided to party like it's 2012. Today lovely hemoptasis began with my first cough of the morning. Argh! I already had a call into the CF clinic and they are going to see me Monday afternoon but I was supposed to call to be admitted in the meantime if things got worse. I prefer to be admitted from clinic because then the docs know whats going on and have already began to formulate a plan of attack. Going in "cold" always seems like it takes longer to get things rolling. If I'm going to be in the Bed & Breakfast then I want IV's going and treatments started so I can feel better and get the heck outta there.

So I'm still home and not sure if I made the right decision or not. I've been coughing up old blood all day long so it was a decent bleed for sure. It's been a very long day. I'm trying to not read too much into this bad start but as Dr. Phil says, "the best predictor of future behavior is past behavior," and man I hate that.

Smokey mountains are not so great....

Can I just say...enough all ready! Two fires are not helping my pitiful little lungs be happy. It's hard to know if I can blame everything on the smoke but its not helping I'm sure. The Boulder 4 Mile Canyon fire could have been more nasty for me except the strong winds the first two days were blowing the worst of the smoke away from Fort Collins--thankfully! (Sorry to all the unfortunate down-winders who took one for Team Sherri.) The Loveland fire is closer and we are getting smoke drift here. Yesterday Rheid could smell smoke on his morning walk so he grounded me for the day and I obeyed. :) I've had to up the O2 since I feel more breathless.

All this coincides with my mail order pharmacy messing up my hypertonic saline prescription. Somehow the rx was deleted from the system so instead of being able to order a refill and getting it within the week, I had to contact the clinic and have them send in a whole new prescription which is a two-three week turnaround. Yes, I shouldn't have waited so long to order the refill but with all the medicines I deal with, things sometimes slip through the cracks. So even though I stretched out the last few vials for several additional days, I still went many days without any. On the bright side, I now realize/remember how helpful this stuff really is. How they can charge $110.00 dollars for the salt water and still sleep at night is the ranting for a whole other post, however!

I'm hoping to avoid more IV's but it ain't lookin' too good at this point. Now if Mother Nature could just get on my team too, I'd be smokin'.

Feeling a little hip...

We have hippos! Since I have a highly developed sense of procrastination honed over many years of practice, it is amazing I'm not trying to finish these little guys while the birth mom is in labor! They feel super soft and snugly--not sure the pictures do them justice.

One will be for little "Max" (or whatever cute name he ends up with) and one for Chelly, the wonderful birth mother who is sharing her gift of life. Both can hold and cuddle with their hippo and think of each other. I got to meet Chelly last weekend and I was impressed with her openness and personality--she is amazing!
Me and my gang. Maggie's hippo takes a peek at the newcomers.

Later tonight: Ooh! I had to create an addition to this blog. A favorite blog I follow beeinmybonnetco.blogspot.com is having a quilt pattern give-away and I get an extra entry by posting this on my blog. I used to love playing paper dolls and so I think this pattern is DARLING. Cross your fingers and maybe I'll win one of three free patterns Lori is giving away. (I've even got my eyes crossed!)

Babies, salads, and degrees, oh my...

Just a few life updates:

I'm gonna be a new auntie again! Woot woot! My sister-in-law and brother-in-law were chosen by a wonderful birth mother a couple weeks ago. Can you tell I'm excited??!! Maggie broke the news to us saying, "I'm gonna be a big sister!" It was so darn cute. I spent part of this Labor Day sewing on my baby/birth mother gift. I made a similar thing for Maggie and her birth mom so Maggie wanted me to make one for her new little brother. We have three weeks to go so I for now I sew and wait a bit impatiently. I'll post a picture when I'm done.

Saturday Christina had to work but she called me to come and share lunch on her break. She works at Mad Greens, a salad shop, so I loaded up on spinach, mandarin oranges and seasoned beef--I could actually feel those red blood cells of mine sucking in all that iron I was consuming (my dietitian would be so proud of me mixing vitamin C with my iron sources for better absorption--amazing, I really was paying attention instead of my eyes glazing over as usual.) Yummy!


Saturday was also Bon Voyage day for Josh. After extensive diagnostics and costly repairs, his car was deemed ship-shape and off he went back to Idaho. He starts his final semester at BYU-Idaho this week. I am so proud of him and his commitment to finish his degree. Over the years he has overcome homesickness, multiple car failure/stranding incidents in the middle of basically nowhere (he's now a bit paranoid and can't say as I blame him), a broken collarbone, mononucleosis, a two year hiatus to serve his LDS mission in Germany, working in Alaska to help pay for school, and the regular college concerns. Way to endure to the end Josh!

Brought back a box of apricots from Utah and made three batches of apricot jam and dried a bunch of apricot leather. Also made two scrumptious Fresh Peach pies for my boys...can you say Domestic Goddess??!!

Started to run low grade fevers this week. Whats up with that?? But holdin' my own.

Breathe easy Kerry, my cyster...

It amazes me how much you can care for someone even when you have never officially met. When you have a thing as major as CF in common, it creates an instant bond between you. Such is the case with my cyster friend, Kerry.

I found Kerry's blog back in May and have been following her story and commenting occasionally ever since. Living in a hospital and on a vent for so long made her a CF hero in my eyes. She had a spunky attitude which I'm sure would have attracted me to her as a friend in "real life" had we had the chance.

She fought for more time to be with her husband and two young sons. She used her experience to bring awareness to the huge need for people to become organ and tissue donors--and did she ever make a difference! Many lives will be saved because of her willingness to tell her story. Here is a link to an article about her written in a local newspaper.
http://www.mlive.com/news/grand-rapids/index.ssf/2010/08/lung_transplant_patient_organ.html

Many people don't know that in most states just signing up to be a donor when you renew your license isn't enough. You must sign up with the donor registry in your state. The process is easy and confidential. If you don't know how, google "organ donation in (your state)" and you can find the information you need. Here is a link to become listed in Colorado: http://www.coloradodonorregistry.org/index.php

I became an organ donor and you can too!

On Wednesday, after almost 3 years on the list with the last 5 months hospitalized, Kerry Hutchin's body could no longer fight as hard as her spirit and she was removed from the waiting list--doctors felt she was now too weak to survive a transplant. In a follow-up article, George Roby, her father related:
"I told her I'm sorry there won't be a transplant," Roby says of his daughter. "And she said, 'Oh, there'll be a transplant.'" Roby has to pause. "But she means the other way -- she'll be giving her organs." Hutchins is a registered organ donor. "She's an angel," her dad says.

This morning Kerry passed away. Here is a link to the updated story.

http://www.mlive.com/news/grand-rapids/index.ssf/2010/08/sparta_mom_awaiting_lung_trans.html

I'm so sorry Kerry didn't get her miracle but she will be the reason many more people will get theirs. My prayers go out to her husband, sons, and extended family--may they be blessed with the peace that surpasses all understanding.

And here we have Idaho...

Growing up in Burley, Idaho, county fair time was always my favorite time of year. We spent the summer working on 4-H projects and then entered them into the fair. This year our Cassia County Fair and Rodeo celebrated its 100th anniversary so it was only fitting that one of its biggest fans--ME--could be there to commemorate the occasion. So last week we loaded up the car and headed off on our 12 hour drive to Idaho.

My sisters and most of their kiddos came to Mom and Dad's to join in the festivities. They actually got there two days ahead of us so the kids could enter some cooking and crafts into the open class judging (They got ribbons and money for their efforts and it was fun finding out how well they had done.) We were jam-packed into the house and got lots of family togetherness.

The fair's official opening is kicked off with a parade. Our parade is full of horses, drill teams, floats, old cars and buggies, tractors, candy-throwers, rodeo royalty and long pauses. Seeing the Burley Bobcat Marching Band brought back lots of memories of my high school days. We got great curb-side seats in the shade.

My 87-year-old Grandma with Joshua, my son.All of us at the parade--minus 3 husbands and 5 kids who either: had to work, had mandatory band practice, hadn't arrived yet, or are off serving missions! Missed you.

One afternoon while the "Older Girls" went to a fantastic quilt shop--yes, I wanted to buy everything in sight it was such a sweet store--Jeff and the younger kids went swimming at the new Rupert Pool. Jeff and Jessica found Dad's business on the sponsor wall.
Good times in the pool!

No fair is complete unless you go to a rodeo! It was Christina's first rodeo experience--she thought the cowboys were hot! The best part of the night was the antics of the first bull in the bull riding competition. After bucking off his rider, the crazy thing refused to leave the arena and would jump straight up in the air and flop down on his back. We were all laughing so hard and even the rodeo announcer was cracking up and said he'd never seen anything like it before.
Christina hanging out at the rodeo with her Aunt Ralene, Jessica, and Uncle Jeff.Me and my Noah!Rheid made it in time for the rodeo.

But my favorite part of the trip turned out to be not part of the fair at all. My mom, my sisters, and I went to the Twin Falls Temple to do some family names. We just missed going through a session so we did an initiatory group before the rest of the family came to do baptisms. The temple was so beautiful! As a family we were able to do almost 50 family names and several hundred temple names. It was an amazing afternoon and no words can adequately express how I felt being there with my family. I am grateful to know that our family can be together forever!Outside the doors of the Twin Falls LDS Temple. My mom and twin sister, Terri, in the backseat on our way to Twin Falls.My older sister, Ralene, driving and me soaking up all the air conditioning in the front seat.

And of course, no good day can't be made better with great food--and lots of it. We went to Gerties Brick Oven Cookery and stuffed ourselves senseless with all-you-can-eat pizza. The dessert pizzas were especially delicious. My amazing parents at the pizzeria.Christina feeds the cousin.
Of course not all the good food was to be found in Twin Falls, Jessica whipped up a batch of delicious pineapple upside-down cupcakes.Jessica's cupcakes were almost too pretty to eat--but I managed to consume three of them. They were worth the extra insulin!

After five fun days in Idaho it was time to head home. We stopped over at Rheid's parents in Utah on Saturday night so we could celebrate his dad's 79th birthday on Sunday. His mom's um...29th birthday was the next day so we got to celebrate that too! Most of his family was able to come up to Heber City for a Sunday brunch before we had to leave. It was so good to see everyone again. I should have taken more pictures there but luckily I did remember to take one of the birthday boy.WHAT A GREAT TRIP!

Venting just a bit...

So I just finished with my IV stint, right. Should be feeling on top of the world, right? Wrong. Not getting the rebound I wanted or expected.

With about three days left to go on the meds, I started to feel a bit more wheezy. I chalked it up to all the dead bacteria bodies laying around and irritating my airways; the doctors have technically explained the phenomenon to me before when I've had the wheezies start up just as I'm finishing IV's. So I thought everything would kind of calm down once my lungs stopped being the killing fields and became their warm, fuzzy, Bacteria-R-Us selves again. Instead, my airways are overly twitchy and when I can manage to get them to stay moderately open, I sound junky.

I started to convince myself that things weren't really that bad and then today happened. Rheid and I signed up to walk a precinct and hand out fliers for a friend of ours running for a seat in the Colorado State House. (Vote Bob Morain for District 52 Colorado House of Representatives! Woot woot!) I had just finished my breathing treatments before I left and I had my oxygen on so I expected to be able to walk door-to-door. I knew I wouldn't break any land speed records doing it but it shouldn't be too difficult either. Wrong.

I bumped my oxygen up an extra liter because I felt so breathless. It sounded like I had inhaled a squeaky toy cuz when I would breathe out, you could hear a smothered whistle. Not cool. Then add in the coughing fits, argh.
Note to random homeowner: I'm sorry about throwing up on your lawn. If it's any consolation, I think the bacteria may help your lawn grow lush and green--since everything inside of me is lush and green.

Thinking I might up my standard daily dose of steroids for a few days before I send up a flare to the clinic. It just wasn't supposed to work like this. Yes, I'm a bit steamed so maybe a small vent is in order.

Never give up...

When I find something that touches my heart, I want to share it with those who share my heart. This Josh Groban song is such a life-affirming one and I count it among my favorites--it is one I listen to when I get discouraged. Derek reminds me that even when things go wrong and things get tough, I can still be victorious as long as I never give up on myself because my Heavenly Father never does--it is He who strengthens me.

Oh what I did in the summertime-part two...

Next stop on the fun train--the Larimer County Fair. We picked up the whole family plus Josh's friend, Jason, and headed to the fairgrounds. Christina got off work in time to meet us there. We walked through the vendors and then saw the exhibits. My favorite part being the beautiful quilts which hung from the rafters. It brought to mind my 4-H days and how much I loved showing off all my hard work--the ribbons and money teaching me that giving my best efforts paid off in the end.

Of course it wouldn't be a proper fair experience if we didn't walk though the stinky animal barns--and these didn't disappoint; the variety of critters and the smell factor teamed up for a perfect sensory assault. Loved it!

Our favorite outdoor attraction had to be the Splash Dogs. The brave dogs who launched themselves off the platform into the water to retrieve their favorite toy were amazing. But the newbies who wholeheartedly ran to the end and then suddenly put on the brakes were hysterical.

The petting zoo was another highlight of our fair adventure. For being in a small space it sure packed in a varied menagerie of tame animals for our petting pleasure: a variety of goats, a pot-bellied pig, llamas, a giant tortoise, a couple ponies, ducks, a giant rabbit, and even a camel. Only the girls were brave enough to enter however. Christina and I paid for a dixie cup of sliced carrots and boy were we popular. Best dollar we ever spent! One overly-friendly pony decided my arm might be just as tasty as a carrot and tried to take a nibble out of my wrist--too funny. Once I decided to sit on the bench and up popped a little goat to keep me company.




Maggie had a blast riding the ponies and taking a spin on the Ladybug Twirl (I sense a theme here.) Personally I think Mike was having way too much fun! It was a great afternoon with the fam.




(Editors Note: Last night about dusk, Rheid and I "walked the wife" around the neighborhood. Two blocks away from home, to our utter delight, we saw seven raccoons venture out of the storm drain, run across the lawn, and vanish into the night. Who needs a fair to see awesome critters??!! It was a tender mercy to be at the right place at the right time to see the cute little family scurry off to have their own adventures.)

Oh what I did in the summertime-part one...

Wanted to share the fun I had on Saturday. A local nursery celebrates bugs, ladybugs in particular, every late summer. I saw the sign advertising their ladybug launch and I was determined not to miss it this year. Problem was I needed someone to be as excited as me at the prospect of seeing over 20,000 ladybugs released. Enter cute-as-a-bug niece, Maggie, and her willing parents.

Luckily Maggie woke up early from her nap so we squirted over to the nursery with five minutes to spare before lift-off. But some party-pooper in charge let the fun begin 10 minutes early so we missed the initial impact of all the bugs. Turned out to be a blessing in disguise--Maggie freaked out at the residual ladybugs flying around. It probably didn't help that the first evidence she saw was a young girl's arm which was completely swarmed with the little red critters. The nursery distributes cups with hundreds of ladybugs in each one and then everyone opens them up at the same time. (Talked a little girl into letting us take a picture of her nearly empty cup.)

I talked to a couple ladies who were standing around and they said the whole thing is creepy in an amazing type way. Once launched the bugs land everywhere--on your arms, in your hair, on your face, everywhere. One lady said people were even plugging their noses just in case. I know my lips would have been locked tight for sure had we experienced the take-off.

As it was we had them climbing on us just a couple at a time but it felt like you had lots more crawling on you anyway. Kind of the bug heebie-jeebies! Found a stow-a-way in my purse too. The creepiest part of all though was trying not to step on any of them. Unfortunately since there were lots of people, there were ladybug casualties, though not as many as you might think considering the circumstances.

Along with the launching there were bug exhibits, bug crafts, bug tattoos, and a large ladybug inflatable. Lots of fun! (Maybe next year I'll save a pft nose clip and bring it along for nasal protection--oh what a fashion statement that would make!)

Did you hear it...

Did you hear it? Maybe it was just a low rumbling where you were but here the sound was quite deafening. I heard some crazy lady yelling, "Yippee! I'm finally free!" Oh wait, that was me. Yeah, I get a little excited after I pull that Huber needle from my port. No more shadowy IV poles following me around. No more itchy skin. No more impromptu macrame sessions with my O2 hose, IV tubing and insulin pump line...yes, I've managed to get all my medical accessories tied in some knots any boy scout would be proud of. Now I get my kitchen table back, my shower back, my taste buds back, and my freedom back. Here's to my first drip-free day. Who wouldn't want to shout that from the rooftops!

This day in history 24 years ago...

It's truly amazing to me how time works. Days can seem long but then weeks and months fly by. And it seems the older I get, the faster time goes. When I look back on the past 24 years, it now seems a blur--some kind of time/space continuum thing. But I do remember precisely what I was doing 24 years ago today.

August 1, 1986 I was in the B unit on the 3rd floor of Utah Valley Regional Medical Center rejoicing in the fact that my little baby boy had been delivered safely the night before, July 31st, at 11:07 p.m. It was hard for me to believe that my 7 month odyssey had come to an end and finally I truly belonged in the postpartum ward.

After 6 months of nausea, weakness and no weight gain, I went into the hospital in pre-term labor. I had never been admitted to a hospital before--and for a cfer, that's saying something! It was a scary time. I stayed there in my cubbyhole of a room for a month on complete bed rest--no bathroom, completely flat, and bored out of my mind. No electronic gizmos back then to pass the time, only about 8 stations on the television which had one button, forward. Slowly, so very slowly, the channels would change and once you made the loop, off the tv went and then you had to wait for it to come back up again after turning it on. It was the bane of my existence, can you tell?

As hard as it seemed at the time, looking back I can see God's hand in it all. Because of his potential prematurity, I was given steroid shots to help his lungs develop faster. (He never needed O2 even being 8 weeks early...that's my boy!) Doing absolutely nothing burned few calories so I finally started gaining weight and so did he. (The morning after delivery when I stood on the scales, I was back to my starting weight.) Josh was born weighing 4 lbs. 6 oz. which surprised the doctors--he did go down to 3 1/2 lbs so we were glad he had some extra weight to spare.

Because he was so early, his body was covered in hair--like peach fuzz. He was so tiny and furry and cute! About an hour after he was born, they wheeled me into the NICU to see him. I started to cough. That little guy got up on his arms, lifted his head and looked around for me. The nurses were freaking out. I'm not sure if he was excited to see me or he was "oh no, I thought I got away from that noise." But I knew in that moment he was a fighter and he would be okay.

That day twenty-four years ago he made my dreams come true--I always dreamed of being a mom. You've come a long ways buddy. I love you.


Notice how big a regular size bottle top/binkie is compared to him. He just swims in his preemie diaper.