Sunday, June 26, 2011

Thanks for coming along...

Happy Bloggiversary!  It's been a little over a year since I started this bloggy blog.  Doesn't seem that long really.  I guess it's my ripe old age showing but time seems to go faster now that I'm (ahem) mature.   It's hard to believe that a year ago we just returned from our amazing 25th wedding anniversary trip to Washington D.C.--our adventures immortalized by my foray into blogging.

This blog has blessed my life in ways I could never have anticipated at the outset.  I have made so many new "virtual" friends who feel anything but virtual to me.  I have enthusiastically followed their highs and sadly empathized with their lows.  Their triumphs give me courage and their courage gives me strength.  The cystic fibrosis community shares a bond that is hard to describe.  We are fighters.  We are lonely.  We are optimistic.  We are afraid.  We cherish life because we see it for the gift that it all its fragility.  We want our lives to mean more than our disease--we want to make a difference.  The internet gives us a way to support each other since other face-to-face support has been denied us because of cross-contamination issues.  A friend I made from across the pond was young and scared and very sick. She felt so alone.  Talking to her (not just me but others as well) gave her courage, hope, options, and understanding.  Unfortunately she passed the end of May--now breathing easier.  I was blessed to feel of her spirit and her love in the communications we were able to share.

This blog has also allowed me to reconnect with friends and relatives.  Their kind words of encouragement and love mean the world to me.  They have strengthened my support system and I am grateful.  Who doesn't need more cheerleaders in their life?  I've got a world-class squad.

Also this blog has allowed me to document life events and record them for family and my descendents.  I just attended a two-day family history/genealogy conference on Friday and Saturday (it was fantastic) and I was again reminded of the importance of leaving a legacy for future generations.  You continue to live on if you leave a memory.

Last Sunday we celebrated my birthday.  Who knew 46 years ago when my parents got my diagnosis and were told I would not live long enough to go to school that I'd still be here plugging along.  Through the grace of God, the faith of my mother, the love and care of my family, and great medical care, I am still here and I plan on being here a lot longer.

Pictures of the Birthday celebration.

Bringing in the blowing reinforcements!

MaryAnne made a thing of beauty--delicious!

Maggie wrapped up and gave me one of her toys.  Mary tried
to convince her not to but she insisted.  We play together
so she thought  I would like it...I LOVE IT.
Max gets to try some birthday cake.  He sure put up a fuss
when his "tastes" were finished.  Too funny.

Friday, June 10, 2011

Cheers and jeers...

I am getting outta here today!  It was a longer stay than I anticipated but all in all a good hospitalization and I feel like once I'm off the meds, I'll be feeling much better and hopefully have lots more energy than I had just before admission.   Here's a look into the highlights and lowlights that comprised these past eleven days.

CHEERS:  To my amazing IV pole that not only appeared to be manufactured before 1979 but actually had a free wheelin' ability to make walking the halls a much easier feat. I even considered contacting the dark-underbelly of the hospital supply network and going into "business" hooking up good IV poles to people willing to pay.  The pulmonary floor by itself could put me on easy street.

JEERS:  To dietary who never seemed to get food delivered in their 45 minute delivery window (in the past it's usually been here within a half hour.)  Waiting for an hour and a half for your meal to come while juggling crazy blood sugar levels is bad form.  P.S. Milk is meant to be cold!
CHEERS:  To the new state-of-the-art bed that was delivered to my room on Tuesday.  It is supposed to do just about everything but make itself.  I was almost giddy in anticipation when I found out my noisy, not-all-buttons-functioning bed was one of the few slated for replacement.   Since I was the first to ever sleep on it, I decided a Sherri Schloss Memorial  Bed Plaque would be a fitting tribute.

JEERS:  To the new state-of-the-art bed that was overhyped by every CNA and nurse who had just come back from new bed training.  I spent the night on the couch!  At 2:30 a.m. I gave up trying to sleep on all the bumps and total unsoftness and curled up on the futon.  Cancel one plaque order.

JEERS:  To the fountain maintenance man who made my outside treks less pleasant and my 4 year old niece downright offended by its lack of flowing waters.

CHEERS:  To the Dallas Mavericks and America's Got Talent who gave me something to cheer for and laugh at during a very dry run of television viewing.  Also, cheers to indexing Census records!  It gave me something productive to do and focus on, passing many hours.

CHEERS:  To large fluid boluses given before meds to keep my kidneys healthy and happy.

JEERS:  To large fluid boluses given before meds at 10 p.m. that require non-stop bathroom visits until wee hours (pun intended) of the morning.  In a battle of Ambien vs. Bladder, bladder wins every time.

JEERS:  To high blood pressure--what's up with that??

CHEERS:  To friends who visited, played Skip-bo, massaged my feet, and talked.  You were a blessing.

CHEERS:  To the nurses who went above and beyond the call of duty--one even went shopping for contact lens solution and brought it back the next day.  You rock!

CHEERS:  For increasing PFT #'s since my dismal 27% showing upon admission.

JEERS:  For not as much increase in PFT #'s as I was hoping for.  Since I can breathe so much easier, I thought my numbers would be outrageously good.  I guess a 30% should be happiness enough.

CHEERS:  For courageously talking to my first doctor on the transplant team without becoming a blithering idiot.  Saturday one of the transplant docs was covering for the floor.  I decided to be brave and ask a few probing questions (which I already knew the answers to from following fellow cf bloggers) to "test the waters."  To my delight, he was a very nice man who was willing to take the time to talk with me and be encouraging.  It wasn't a long visit but it helped me in my process of processing.  Deep thought, I know.

JEERS:  To the severe thunderstorm that decimated my garden with drifts of marble size hail.  Tomatoes stripped.  Peas flattened.  We didn't even get a drop of rain here but an hour north at home, all heck broke loose. Not looking forward to seeing all my work ruined.  Stupid hail.

CHEERS:  This round goes to Sherri.

Thursday, June 2, 2011

Now and then...

NOW:  All good things must come to an end and my 5 3/4 months of being IV free has done just that.  I checked myself into the Denver Bed and Breakfast on Tuesday to hopefully get my airways opened up so I can breathe deeper and easier.  MRSA isn't the culprit this time as much as the pseudomonas, which is a switch from what has been the norm lately for me.  With four antibiotic IV's on board and incompatibility issues, I am pretty much stuck to Mr. IV Pole 24/7 except when I shower.  They upped my steroids to 40mg/4times per day so I am being stalked by the blood glucose monitoring team--which, trust me, can be very annoying.  They start throwing correction factors, sensitivity rates, carb ratios and other pump lingo around so much that instead of hearing, "If we make changes to your carb ratio at 2 to 1 and cover with 20 nph units and you only drop 25% then we'll have to change... and so on," I start to hear "wa, wa wa wa wa wa.  Wa, wa wa, wa wa wa..."   Just  shoot me now!  Getting blood sugars stabilized while loading up on steroids and fighting an infection at the same time is nearly impossible--but they never stop trying.  Darn their determination to fix me!  The steroids have my face so flushed and hot I think I could fry an egg on my cheeks. 

On a whew, wipe-the-brow kind of note, I was thrilled when my port (now known as the Little Port That Could) flushed like a dream when accessed the 3rd time.  A nurse accessed it twice but it would neither push nor pull fluid.  Visions of needing a new port started dancing through my head until the charge nurse came and tried one more time and it worked.  What a relief!  I didn't want to have to admit that it hadn't been flushed since December when I finished up my last treatment session.  I kept meaning to get it flushed but putting it off for later was much easier.  And honestly, I thought I would have to do IV's before now anyway and didn't want to turn around and access it again so soon.   Sometimes I take this saving money bit a little too far.  
Me in my luxury suite
THEN:  AKA--What I've been up to lately that was lots more fun than hanging out at the hospital.

We took a road trip to Utah for some wonderful family experiences.  First, we attended the temple sealing of our darling Max to his adoptive family.  He was as happy as he could be looking at the chandeliers and taking it all in.  He has a special spirit about him and is truly a blessing to our family.

Beautiful forever family at Mt. Timpanogos Temple
Later that afternoon we all met back at the park across from the temple to take Schloss Family pictures. Since we had added 8 new members since our last portrait, it was the perfect time to update.  Haven't seen them yet but hopefully I don't look too weird.  Last time, the photographer had to photoshop my head into the  portrait since I was the only one who looked wacky.  We then all headed over to Tabitha's, our niece, to see her new home and have a barbecue.  
Sister Weatherford returns
The next event was all about my side of the family.  My sweet niece, Krista, returned home to Spanish Fork, Utah, from serving her 18 month mission to the California Carlsbad Mission.  She learned Spanish and loved serving among the people there.  After her talk, we all gathered at her house for lunch before heading back to Colorado.  Took some fun pictures and here are a couple to share.

The Jackson Ladies
Me, Ralene, Mom, Terri (my twin)

The Cousins

A few days after our Utah trip, my sister and her daughter took an airplane ride to Colorado for a week of sight-seeing.  We had a great time checking out quilt stores, going to Estes Park, watching the Rockies, and hanging out at the aquarium.  The weather turned cold and rainy for most of their trip so the zoo was a bust this time.  We were lucky the Rockies game was well under way before it started to rain.  By the end of the 9th inning, it got so cold we could see our breaths.  Thank goodness for rain ponchos and blankets.

Me and my girl hanging with the fishes.

Waiting in line to get our Denver Aquarium tickets.

I am a Survivor!!!

Josh took our picture at the beginning of the game.
 He brought his friend, Jannette, along for the fun..
Unfortunately, the Rocks let it slip away in the final
inning, 7 to 8, for the Padres.  Heartbreaker.