26 days, but who's counting...

I've wanted to write a blog update for several days now but found if I procrastinated long enough, the feeling passed.  Heaven knows I've had sufficient time during this hospitalization to write the great American novel (and get it well on it's way to publication--at least it feels like.)

Every admission comes with it's own unique set of physical and mental challenges which ebb and flow over the course of the stay.  Sometimes you surprise yourself with how well you "handle" a certain event/setback one day and then shake your head over how something less significant or even trivial can completely derail you the next.  Knowing this fact to be true, I still inexplicably strive for the "perfect" stay--the one where you are always cheerful, patient, anxiety-free, hopeful, hungry, calm, motivated, and grateful despite annoyances, incompetence, illness, misunderstandings, side effects, sleep deprivation, scary moments, uncertainty, and tedium.  I know.  I know.  It's mental to set yourself up like that each time and come crashing down to reality when I'm not Polly Perfect Patient but rather Irene Irate Inmate.

I've experienced a myriad of different emotions over the course of the past 3+ weeks.  Ones I think I want to write about and share but then I stop short in doing so.  I don't know if seeing things in writing will somehow make what I can now classify as fleeting thoughts seem permanent and unchanging and I so desperately want the outcome of these thoughts to not be permanent.  Or that if I somehow find voice to these thoughts, then I will have to deal with them sooner rather than later and I want to put them off as long as humanly possible.  (Even now as I'm reading this, I see my my attempts to explain my feelings are still trying to veil those same feelings.  Hmmm.  I'm starting to think a good psychotherapist could have a hey day with me.)   I guess I will put deep thought sharing off til another day.

I was ready to be discharged on Friday (11-11-11 was supposed to be a lucky day after all) until I had a mutant mucus plug go rogue the night before in the same area as the pleural infusion I've been trying to eradicate.  So frustrating not to mention painful.  So I've been doing a few new things to try and dislodge this onery critter.  More moisture was ordered.  I felt like I was wearing a cone of shame.  It was annoying and my neck went stone cold after a while but the mucus was less than impressed.  RT brought in a new vibrator/percussor to supplement my vest and give a more focused delivery of percussion to the right lower lobe, but it has not succeeded in it's mission.  So in a mucus trifecta, the doctor decided to try the IPV (Intermittent Percussor Ventilation) system.  It's like a nebulizer that gives short bursts of positive pressure air into your lungs that shakes you from the inside out.  Kinda creepy because they said it can cause bleeding in people with bleeding tendencies--hello, "people" describes me.  So I was somewhat hesitant to try this one but it wasn't so bad and it made me cough up stuff...just not that darned plug.  Tonight we tried slanting my bed down (trendelenburg) while doing a breathing treatment and being vibrated on all at the same time.  I think that has been the best combination so far.  Still not cleared and I'm way past frustrated but I will prevail!

Me with my prednisone-induced double chin breathing mist though my cone of shame.

I've been here long enough to see the seasons change.  No, I'm not referring to the view outside my window. I'm talking about the change of seasons I've been able to experience through the Gift Shop. When you've witnessed Fall merchandise change to Halloween decor, then out parades Thanksgiving chotskies followed by  snowmen mugs and all things Christmas--you know you've been here way too long.  My goal is to get outta here before chubby cherubs and hearts make their grand appearance.  Curse those places of all things cute but pricey.

Witches hat to spook my Halloween visitors--courtesy of the gift shop!

Tigger  with his long legs.  He learned how to walk while I was here. 

Dinner in the cafeteria with Tinkerbell--she didn't want to put on her costume, again.

University of Colorado Hospital is building on a new addition--you can see part of it outside my 9th floor window.   One day they brought in a window vinyl to warn people about looking at the welding going on outside.  Funny thing was that as soon as anyone, including medical personnel, walked into my room and saw the sign, over to the window they went to look outside to see if they could see the welding!  The power of suggestion is alive and well.

Oh no, not again....

Well, here I am again--back at the Denver Bed and Breakfast.  Is it:
a.  because I can't get enough of the all-you-can-eat gourmet food?
b.  because I miss my friends who work while wearing lounge wear and accessorizing with stethoscopes?
c.  because I sleep so much better in a bed that sports side rails and nifty buttons?
d.  all of the above

Actually, another early morning bout of lung bleeding teamed with an increased shortness of breath and rib pain led to this admission last Thursday.  Thankfully the antibiotics are kicking in and I'm breathing much easier.  I'm also glad a ct scan figured out the source of my rib pain, a small pleural infusion with heavy plugging.  At least now I can stop financing my chiropractor's next Caribbean cruise.  

Yesterday I had a bit of excitement.  About 3  o'clock I decided to take my little self outside to bask in the record setting 80 degree sunshine.  Just before leaving my room, I noticed my cell phone hanging out on my bed and thought, "Self, you shouldn't leave your cell phone lying around in plain sight when you're not in your room."  So I quickly pushed said cell phone under the bunched up sheets at the foot of my bed and left before any medical person could put a stop to my intended field trip.

An hour and a half later I was happy to return to the confines of my nice cool room.  Imagine my surprise when I saw my bed all spiffy and hospital cornered when I walked in. After ascertaining there was no little blue cell phone anywhere to be seen, my stomach just dropped.  Long story short, the CNA decided to change my sheets "just to be nice" and didn't notice the cell phone.  She had offered to change them earlier that morning and I told her they were just fine.  So with a colorful word, off she flew to the laundry on a cell phone rescue mission.   I guess I did a good job of hiding it after all--but lesson learned.

After the beautiful day yesterday, today I watched as a winter storm began forming over the mountains.  It is now snowing and the forecasters say we could get up to 12 inches of snow by tomorrow.  This is life in Colorado.

Nirvana, we have a problem...

These past few days have been extremely discouraging.  What I thought might be my ticket to less IV's and hospitalizations became instead a fast pass to shortness of breath, chest tightness, a need for additional oxygen, and overall huffing and puffing with the least bit of exertion.  By Friday I knew it wasn't just my imagination, people kept asking me if I was okay.  I couldn't carry on a decent conversation without sounding and feeling winded.  It was a TOBI flashback--like a bad trip.

So I fired off an email to clinic Friday afternoon and they told me to stop the inhalations and see if I felt better by Monday.  I was kind of hesitant to stop in case my symptoms had nothing to do with the Colistin and I had a bad infection taking over instead.   Well, I think it is safe to conclude that my experience with Colistin has come to an end.  Today I am breathing much easier--not great, but so much better.  Argh!  I really wanted my body to cooperate with this inhaled drug.  It could have made a huge difference--instead it created a huge problem.

Maybe the next big thing will be my answer...I sure hope so!

Move over for this bad boy....

It is not enough that all my medical paraphernalia takes up two cupboards and one drawer at my house and a fair share of countertop to boot...move over and make way for the newest in high-tech gadgetry.   Meet my newest nemesis buddy!

Kinda looks like R2D2 flying a space pod getting ready to shoot enemy invaders from Endor--right??!!  Well maybe not, but I swear you need a rocket science degree to figure out how to put the critter together.  Don't even get me started on the 50 step process to clean (immediately after each use) and disinfect (every day) the thing.  If it weren't for the speedy delivery this doohicky claims, it would be hurtling towards the death star right now.  And let me just say, if you've got a bit of extra money lying around, now would be the perfect time to invest in distilled water because there is gonna be a huge upsurge in sales courtesy of this little bad boy.

I officially began my inhaled Colistin today.  I was a wee bit nervous but I managed it all by myself without any allergic issues--wahoo.    Inhaled antibiotics and I don't generally play well together.  I was all excited when Tobi first came out but it was a dismal failure.  It actually made my breathing worse and after sticking it out for a month (I was determined this was going to be my nirvana), I ended up in the hospital fixing myself from the miracle drug that wasn't.  Never again I vowed.

No worries, I was told.  They are working on a new inhaled drug that is showing promising results.  Great!  But by the time Cayston was finally approved, I had already developed an allergy to the IV form.  Ugh.  So that was a no go.

Since my Tobi trauma happened years earlier while I was living in Utah, my Colorado care team thought I should give it another try.  Because my medication options are so limited, I reluctantly decided to try again.  Hello--what part of never again didn't I remember?  Dismal failure part two--but at least this time I only gave it a week before I pulled the plug on that experiment.

So that brings me to Colistin.  I've got a lot riding on our relationship.  If this works out between the two of us, it could mean less frequent trips to the hospital and feeling better in between times.  Here's to a new beginning.

A bittersweet memory...

As part of my August antics, Rheid and I traveled to Burley, Idaho, for a long weekend.  Our county fair, held the third weekend every August, brings lots of family and friends back home.  So it is also the typical time for Burley Bobcat alumni to hold their class reunions.  This year was Rheid's 30th (gasp)!  I can't believe it has been that long.  Since I was two years behind him in school, I know many of his classmates.  They were the mighty Seniors when I was but a lowly Sophomore.  So it was with more than a little trepidation that I strapped on the portable O2 and made my appearance at the reunion--not the look of  "what a lucky guy Rheid is to have such a young, hot looking wife" that I wish I could have gone for.  But I am glad I didn't talk myself out of attending because everyone was gracious and friendly and soon I was able to just relax and be me.  For better or worse.  We had a great time catching up with people and remembering old times.

Another big reason we took the trip was to be a part of my 89 year old grandmother's gigantic living estate sale.  She moved into assisted-living housing last year and had been storing things in case she didn't like her new place.  Well, now she is settled and enjoying her living situation.  Mom and Dad planned to have the sale over fair weekend knowing we'd all be home to help out.  My sisters and their kids did the majority of the work because Rheid and I came later in the week.

Grandkids having fun at the check out table.  

I had no idea how much stuff there was in Grandma's storage unit. Table after table of memories filled my parents driveway and yard.  It was hard to watch people carry away Grandma's things.  Large bowls that used to hold mashed potatoes and fried chicken.  Bags after bags full of colorful yarn she used to crochet afghans, dolls, animals, pot-holders, or just about anything you could imagine.  Clothes I remember her wearing.  Knickknacks that sat on her shelves and fireplace mantle.   It took a lot of will power to not make "treasures" out of everything.

Even this picture doesn't completely capture the magnitude of the sale.

But the things that reminded me of Grandma and Grandpa the most were the contents of the toy closet.  I picked a few toys to bring home with me because I couldn't bear for them to end up where someone didn't love them as much I as did.  There were just too many fun memories to let them go easily.

In fact, I couldn't think about many things too much or it felt too sad.  So I chose to focus on the good memories and remember that stuff is just stuff after all.

THE END

 

Can I just say...

(Editors Note:  Whining alert.  Don't proceed if you don't have any cheese and crackers available.  Thought about not posting this because there is a lot of sniveling involved and the rational part of me knows things really aren't that bad and could be a whole lot worse.  But here it is because, it is what it is.)

Sitting here with tears rolling down my cheeks, typing through the blur, and wishing things were different.  Today is Day 15 and can I just say I'm tired of it.  Tired of it all.  Tired of beeping pumps that take forever to get turned off.  Tired of meal trays being sent to my room that I DIDN'T order.  Tired of describing the color and texture of what I'm coughing up!  It's the same people...green/yellow and thick.  Believe me, you'll be the first to know when it changes. Tired of hearing "I can't find your orders for D-nase."  Uhhh, maybe because I don't take the stuff...sorry to disappoint you but D-nase doesn't do a darn thing for me so I choose not to waste my time breathing it in.  Tired of hearing "Your lungs sound clear!"  from nurses, RT techs, and even the glucose management team who listen to me.  Yes, things do tend to sound clear when your airways are not open enough to let the junk move around.  The doctors can hear and know the difference.  I can feel the difference.  Tired of stethoscope wielding people, period.  Next person who says, "Do you mind if I take a listen to your lungs?" just might get an earful of  "Yea, I do mind.  Go away!."  Along the same vein, "Take a deep breath for me."   Are you kidding me?  If I could do that, I wouldn't be here.  Do you really want to wait for 5 minutes for the coughing spasm to stop so you can continue to listen to me breathe in and out?  Because I do sound clear FYI.   Tired of reporting every bowl movement with its accompanying consistency description.  Tired of saying thank-you hundreds of times a day for every thing that people do for me.  I am grateful for their help, I am.  I want to be a nice patient because I want them to want to take care of me.  But I'm tired of being nice.  Tired of asking for blood sugar checks and then having to tell them they don't need to push hard because I'm a good bleeder.  Those darn finger sticks can go to the bone it feels like.  When the CNA rubs the alcohol wipe long and hard enough to erase your fingerprints, you know your poor finger doesn't stand a chance.  Clearly, they will not be the insightful person to grasp the concept of easing up.  Tired of nighttime saline boluses that turn me into Old Faithful--every hour and a half the pressure builds and even ambien can't stop that force of nature.  Maybe I'm just tired.

Whew, I just realized the tears are done.  I wonder if I can bill myself for my own therapeutic rant.  I feel lighter.  I feel better.  I believe I'll even be able to say thank you when the lunch I didn't order arrives in my room...again.

August antics...

My August antics, now stretching on into September, need to get out of my head and into this blog.  Heaven knows it's not that I don't have time on my hands--I just can't seem to put my random thoughts together coherently.  I'm blaming it on the drugs!  They're tough, they can take the heat.

I've been lounging at the Denver Bed and Breakfast since Monday the 22nd.  Yeah, not how I wanted to spend my last two official weeks of summer.  But at least I got a trip tucked in just before my lungs went south.  I felt very blessed that the hemoptosis (bleeding from lungs) waited until a few hours after we got home (aka: the dead of night) to make its appearance.  The tell-tale gurgle interrupted my sleep and then my life.

Because my last IV therapy benefits didn't last near as long as the doctor and I thought it should, we decided to change things up with this hospitalization.  We dropped my old standby, Tobramycin, for a different drug, Colistin.  Colistin is a very strong drug that acts like a detergent in your body. A weird side effect of Colistin is how it makes your tongue and mouth kind of numb and tingly--I didn't like that too much but it faded after several days. Also, it can be harmful to the kidneys so they must do blood draws one day and urine samples the next to monitor kidney function.  Because of this potential problem, they don't send patients home on it.  Therefore, instead of my usual "I'll stay until I feel better then I'll finish the IV's at home" routine, I've had to resign myself to two weeks of inpatient-ness.  I didn't realize how much being in charge of my timeline helped to make the stay seem shorter.  This has seemed extra loooong.  But all this being said--I LOVE COLISTIN!  This kidney clobbering medicine has upped my FEV1 to a whopping 35%--a number I haven't seen since the Great Debacle of 2009.  I am cautiously excited that it can really help me in my fight.

One disappointing part of this stay has been my loss of Vancomycin.  This red-man producing medicine now causes me bronchospasms.  Even with Benedryl on board, my lungs twitched for hours every time it ran. The twitching just about drove me nuts, especially during the night.  Finally I figured out the spasms were coinciding with each Vanco dose--about an hour into each infusion.  The weekend coverage doctor didn't think the Vanco was causing my symptoms but humored me nonetheless and discontinued the drug.  Taa daa!  No more twitchy lungs.  Haa!  Take that mister doctor who doesn't know my body as well as I do.

Other than drug issues, the only out of the ordinary thing here has been the ICE agents who have been guarding door #902.  The patient name listed on the doorplate definitely looked like a fake--I honed into that immediately using my NCIS marathon training.   The name started with a V and had about 13 more assorted letters strung along after it.  Finally on one of my intelligence-gathering laps around the floor, I got a good look at the offending patient.  Can you say terrorist??  I know.  Profiling is so yesterday.  But seriously, he fit the part.  I realize he probably wasn't feeling good and I wouldn't want to be judged  by how I look at the hospital but he sure appeared sketchy to me.

I guess I didn't get any real "thoughts" out--still processing the whole experience, my future, and other deep things.  But I am grateful for the tender mercies and protection I've felt through these past twelve days.  I am truly blessed.

Feeling so good, I asked if there was an available bike to use.  This top of the line
1980's model now adorns my room.  Check out that high tech wheel belt.  

Needing a new, clean pillowcase, my son sent along this old one a sweet lady made for my wedding.  The matching case says "I rule the Rooster."  He thought it would be hysterical.  Problem was whenever a healthcare worker saw me on my pillow, especially the night nurses, they thought I was bleeding. Really freaked out a couple of CNA's.   Sent the rooster packing!

Shiver me timbers...

Kept meaning to blog about the events of last week, but time and motivation got the best of me. Previously, because of a lot more coughing and shortness of breath, I went to clinic. My petri dish grew out MRSA and Pseudo.  Color me unhappy since I just finished a hospitalization and clean-out in June.  So after battling a few days with my insurance company, they finally allowed me to get a  two week supply of Zyvox (oral med used to treat MRSA--super expensive) instead of a full month.  I was anxious to start feeling better because my family was coming to visit and I wanted to be up for the fun.  I got three days of Zyvox under my belt before they arrived on Monday.

I had been feeling kind of nauseous off and on for a few days before but by Monday it was mostly on.  We all trekked over to the Chinese Super Buffet (score originality points for that name) for dinner to celebrate my son's 25th birthday. (Happy Birthday Josh)   Surely with lots of buffet choices, I thought I could find something that sounded good to eat.  No luck.  Tuesday morning I had to admit that all symptoms pointed to a partial bowel block.  I guess with the heat, more mucus going through the system, and the final straw of the antibiotic, my system shut down.  It was time for drastic measures--I put in a call to Gentle Waters.

So while my family was seeing the Clydesdales and eating pretzels and drinking rootbeer on the Anheuser-Busch Tour, yours truly was lying on a cold table experiencing a high colonic!  What fun.  It was a moving experience to say the least but it did the job.  The whole process wiped me out that day and the next so that was kind of a bummer.  (Are you catching all these puns...I'm cracking myself up while typing...see, another one!)

Getting ready to go on a pirate adventure.

On Thursday I felt up to going to the Museum of Nature and Science in Denver to see the Real Pirates: The Untold Story of the Whydah, From Slave Ship to Pirate Ship exhibition.  Funded by National Geographic, it is a travelling exhibit which teaches about the true life of pirates through more than 200 artifacts from the wreck of the Whydah--the first fully authenticated pirate ship ever to be discovered in U.S. waters.  It was amazing what had survived after being under water for more than 300 years.  The sediment created a type of cement which basically encased and preserved a wide variety of ammunition, guns, dishes, shackles, trinkets, medical equipment, and lots of other things you would expect to see on a large ship. They even recovered an entire treasure chest of silver "pieces of eight."  I was a bit sad to learn that a lot of pirate lore is simply not true.  Pirates didn't make people walk the plank.  If they didn't want you around, they just threw you overboard.  Pirates also didn't bury their treasure so there is no such thing as a pirate's map showing where the loot was stashed.  It was an interesting experience.

Dad with his new bff.

Two scurvy mates:  One-eyed Rheid and Noah the Hook.

All too soon it was time for my parents, twin sister, and my nephew to say good-bye and head back home to Idaho and Utah.  I wished we lived closer but I treasure the time I do get to spend with them.

Doesn't it look yummy??!!

The colonic lady gave me some healthy suggestions and I am implementing a couple to see if there is any improvement in my over all wellness.  I purchased an exercise ball to sit on while I am at the computer.  If you bounce while sitting on it, the ball works like a mini-trampoline. Supposedly there are a lot of health benefits from "rebounding" and the ball is much cheaper than a mini-tramp.  I am even bouncing while I blog--healthy multi-tasking.  I've also started a green drink supplement that is the anti-oxidant equivalent of 15+ servings of fruits and vegetables.   Now I'm not saying that it is "oh, yummy!  Can I have some more?" tasting but it is much better than the "licking a lawn mower blade " taste of wheat grass.  Ahoy Matey, here's to better health!

Control and progression with cf...

A blogging cyster issued a challenge to write about my personal thoughts and experiences in dealing with CF control and progression.   I am taking up her challenge.  Hang on, it could be a bumpy, rambling, disjointed ride.  Here goes.


It concerns me when I hear about people trying to "control" their CF.  They mistakenly believe if they do everything just right, with 100% compliance, they will/should remain healthy and have little or no problems.  Because when the inevitable sickness or decline comes, they rationally have to blame themselves because after all since they were the ones in control, they messed up somewhere along the line.  In their need to control, they create the perfect set-up for discouragement and depression.  I have learned that control is an illusion and the harder one tries to gain it, the more elusive it becomes.  


I found this out when I developed generalized anxiety and panic.  It began in 8th grade and then became even more problematic in my early 20's.  I was afraid of just about everything.  Who needed aerobics--my heart raced with the slightest provocation.  It was a miserable time.  Part of what pulled me out was finally understanding that I didn't need to control everything.  I could trust in myself to handle whatever came my way.   I still experience some anxiety from time to time, but it doesn't completely derail me any more.  


Instead I have chosen to be the manager of my disease. I can influence and direct the course of my cf  by being compliant in taking my medications and in doing my breathing treatments.  I ask questions and value input.  I do what works--I don't have time for the rest.


I cringe when I hear about well meaning parents who in their need to control the outcome of their child's disease become hyper-vigilant to the detriment of their cfer.  I knew a family who posted a sign on their front door telling of their daughter's fragile medical health and the rules for entering their house.  Being confronted with that every day would not only be embarrassing but you would believe you really are fragile, a self-fulfilling prophecy.  Another mother freaked out because her pre-schooler in daycare was allowed to play in the dirt.  Didn't the workers know how dangerous dirt could be to a cfer?  Oh my.  If your cf child is in daycare, you have bigger worries than dirt, believe me.  Please go outside right now and make mud pies!  Let your kid be a kid.  A different mother raced out of a dentist's office when she found out another child there waiting had cf.  She called her clinic to see if her child needed some medication to counter-act the exposure.  Then she called the dentist's office and berated the staff for scheduling two cf families on the same day.  Unbelievable.  There could be a cf family in the same line of the grocery store--you don't know.  Take reasonable precautions when needed then just live life.  


Sometimes I feel like my cf experience is marginalized since I must have a "mild case" of cf.   I carry the two most common mutations of the cf gene so I am not some cf freak of nature.  I have had cf symptoms and challenges since birth.  I am so grateful my breathing problems developed slowly compared to many cystics; I don't take that blessing lightly.   However, when I took 16 pills with each meal and still spent time doubled up in a ball with stomach cramps, it didn't feel like a mild case.  When I was given milk and molasses enemas (yes, that was the protocol back then) to clear bowel blocks, it didn't feel like a mild case.   When getting perfect and honorable attendance certificates like your sisters was an impossible dream, it didn't feel like a mild case.  (In fact, I missed so many days of  elementary school some years I could have been held back had I not been a good student.)  When my boss took me aside to tell me people have complained about my coughing (had a summer job at a sandwich shop) and I was humiliated, it didn't feel like a mild case.  When my OB told me at the conclusion of my pregnancy that he didn't know if me or my child would be alive at the end, it didn't feel like a mild case.   When I wondered if I would live to see my son go to school, be a boy scout, graduate, or grow to adulthood, it didn't feel like a mild case.  When you honestly can't remember the last time you felt good, it doesn't feel like a mild case.  And now that I have coughing fits that take my oxygen sats into the 70's while being on oxygen and wondering if I'll ever catch my breath again, it absolutely doesn't feel like a mild case to me.  Whenever and however the cf challenges come, they are remarkably similar with the only difference being the timing. 


One thing about being blessed in beating the odds is the mistaken idea that you will always continue to beat them.  After all, you must be doing something right cuz it has worked out so far.  It is a humbling and scary experience to finally realize that despite your best efforts, this crummy disease is winning.  Progression is inevitable.  Taunting, it seems to say, "thought you were special, huh--think again cyster!"  I'm still coming to grips with that and am more successful some days than others.  I believe our experiences are tailored so we can create maximum growth within ourselves.  Growing hurts.  But I will continue to fight.


++++
1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.

2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.

3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.

4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.

5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.

Apocalypse now...

Ok, last night beginning about 10:30, the heavens opened and we had massive quantities of lightening and rain with a bit of thunder thrown in for good measure.  While I kneeled at the side of my bed saying prayers, my dog was frantically licking my toes trying to calm his frazzled nerves and then it stuck...a loud thunderous clap that sent him flying around me to get between me and the bed and then between Rheid and I.  His last nerve was shot.

The sky was filled with sheet lightening in every direction.  It was beautiful in a creepy kind of way. It lasted a couple hours.  Just when I'd think the storm was rolling out to the plains, another wave would hit and start all over again.  I gave up even trying to go to sleep and just listened to the distant roll of thunder and the rain drumming against the bedroom window.

Now today the weatherman said we were in for another stormy night but it wouldn't be as severe as last night.  So frugal little me turned off the sprinklers this afternoon to save our water bill (which can be shocking in the summer) since last night took good care of our watering needs.

Well about an hour ago, great big rain drops hit me as I walked back from the neighbors.  Within 5 minutes, holy hail!!  Most of it was marble sized but you could see random quarter size and larger ones.  This storm came with a strong wind so the hail was hitting the windows, the trees were bending and whipping around, and rain again was over-flowing the gutters.  Our sidewalk went under water and the road at times looked like it was boiling.  It felt and sounded like the beginning of the Apocalypse..not that I'm dramatic or anything like that as you can tell.  The amazing part was that after about 20 minutes we had blue skies again.  Crazy.

But as you can see, the radio warning us to take cover and watch for potential flooding or spawning tornados could not stop me from venturing out to the front porch to document the fray.  I live for danger!   Although the pictures give you some idea, they don't do the storm justice.  I think the sound made the situation feel spookier.  Neighbor kids came out of hiding with galoshes and inner tubes to splash and float down the street.      My flowers are flattened, tree leaves are shredded, and my garden hopefully lives through the deluge. I'll have to survey the damage tomorrow. We have had so much rain this summer, I should have planted mushrooms.  They might have fared better.

Water filled up the rain gutter so over the top it came.
You can see the hail bouncing out too.

It looks like it is snowing across the way.

Water starts to cover the sidewalk as the hail splashes.

Sprinklers off and away we go...

I grew up camping and fishing all through the summer months.  But now when I contemplate going camping, all I can think about is oxygen, generator noise, equipment sterilization, no campfires, etc.  Oh my!  Not my idea of fun anymore.  But just knowing all of my family was off enjoying a 4th of July fishing trip in Idaho without the Schloss family to set the fishing standard high, well, it just sorta hurt my heart.  So I asked my dear husband if we could do a Staycation instead..  He was up to the challenge!

Braving the wilds of our backyard, he set up the tent last night.  Who needs the sounds of water lapping up on the shore or the crackling of fire??  We had the hum of the neighbor's central air-conditioner fan and the popping and whizzing of illegal fireworks purchased over the border in Wyoming going off all over the neighborhood to lull us to sleep.  Aww, the sounds of nature.

We invited our 4 year old niece to join in the fun.  When it was time for family prayer, she volunteered to offer it.  Kneeling in the dark, this is how it went:  "Dear Heavenly Father, Please help that the mosquitoes won't get us and that we can stay in our own sleeping bags...bless the tent to keep us safe...please help the fireworks to stop so they won't wake us up..."  It just melted our hearts.

This afternoon we are trying bbq ribs on the grill and making dutch oven chicken followed by general merriment until dusk when we will venture out to the city fireworks display that never fails to disappoint.  Sounds like a holiday to me.  Happy 235th America!!

Cuddling in the dark in the glow of Christina's  phone cam

It's hard to go to sleep when you're jacked up on rootbeer floats

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 is...in 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.

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.

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.

Head up, shoulders back...

I've been waiting to give an update on my clinic results and I finally got most of my questions answered. So here goes the run down:  pft's remained at baseline--yippee; blood levels looked good except for iron (very anaemic even after upping the iron supplements); no rib fracture seen in x-ray so ribs rubbing against inflamed tissues is the diagnosis--might get some relief after a course of IV's or might not;  x-rays did show more infection present;  sputum culture at first showed no MRSA (got cocky and did the happy dance) only to find out today that MRSA did indeed grow out but in smaller numbers (grateful for decrease but bummed it's still there) so clinic will try to get a 2 week course of Zyvox approved through insurance to hit the MRSA;  pseudo is the current attention hog in the germ department but I'm trying to hold off on IV's for a bit longer; found out I am officially 5'2" now instead of the 5'3" I've been since junior high, just part of my geriatric charm ...shrinkage;   A1C score was a 7.5 which surprised me since my blood sugars have been lower without the steroids; and then for the first time my hormone levels were checked and they are all out of whack--which explains a lot!  That's it.  That's enough.

Today was my first ever physical therapy session (please notice the "physical" part of therapy although I could definitely use the other kind, especially after days like today.)  Look up compliant patient in the dictionary and there will be my picture.  Last week my CF team again admonished me to work on strengthening and growing bone because of bone density issues thanks to the prednisone and malabsorption of nutrients.  So off I went to PT to learn how to "properly" exercise so I don't fracture anything while trying to fix things.  Not sure what I expected but that wasn't it.  I did learn I have horrible posture however so I'm to focus on correcting that first.  My "good posture" muscles didn't much enjoy finding out they were slackers and pitched a fit but I showed them who's really in charge. On a fun note, I did surprise and impress the therapist with my strong abs--the only perk to coughing for a living.  I also scored a cool stretchy band as part of my workout routine.

Since my departure from National Jewish coincided with the departure of 35,000 fans from Coors Field (Go Rockies!) I decided to stop by a quilt store and let the traffic dissipate a bit. I'd already had my fill of Denver traffic earlier when it took me a half hour to go less than a mile due to a semi accident in a construction zone.  I completely broke the "check in 30 minutes before scheduled appointment" rule and was even 15 minutes late for the actual appointment.  I was working myself up in the car until realizing getting frustrated wasn't going to get the parking lot moving so I went to a zen place and prayed they wouldn't make me reschedule.  They do have scary signs posted telling you that is their prerogative.   Being told I needed to reschedule, I could just picture myself  beginning to babble incoherently with words such as gas prices and time being the only words the receptionist could understand before I exploded into little bitty pieces...did I mention something about hormones earlier!   At my traffic oasis I found the backing for my latest quilt project I'm doing with a group of girlfriends.  I'm excited to see how it all pieces together.

Keep catching myself slumping over while typing this blog--think this posture thing is going to get on my nerves.

p.s.  Oops, forgot.  Here is the photo I promised last week.  Did I mention hormones?

Pinwheel Baby blanket I just finished.
The lighting makes it look more yellow than it is.

Doesn't look a mile over 99,999...

He's a looker!

My little 2001 vortex blue beetle and I have been though a lot together and yesterday he rolled his odometer--100,000 miles!  Toot that horn and celebrate.  This is the first new vehicle we ever bought (we usually purchase new-to-us models) so it is the first time we've put all the mileage on ourselves.  My little fanny (or as my daughter would be quick to point out--"lack of fanny") has been in the driver or passenger seat for 95% of those miles so I've left quite an impression on my blue buddy.  :)

Granted, with digital odometers, rolling an odometer doesn't have quite the build up it used to.  Now you don't get to see all the 9's in various stages of progression--like an odometer eclipse.  Then finally they are all 0's  and you feel like you just got a teenage eye-roll--you know, like the ones you used to give your parents when you thought they weren't looking.  But now as a parent you realize you don't have to see them, you can feel an eye roll clear across a room.  So I guess I didn't get away with as much teenage angst as I thought I did--sorry, Mom and Dad.

My blue buddy and I are a lot alike:
1.  We are definitely not as young as we used to be and require additional maintenance.
2.  We each put off getting "tune-ups" until something doesn't work right any more.
3.  We have both had an unfortunate run-in with  handicapped signage.  (Mine in the form of needing a placard to hang from the rearview mirror so I can park by a handicapped sign.  His in the form of having a new driver take him to the high school parking lot to practice driving manuevers and accidently plowing down a handicapped sign while trying to leave a parking space.  This was his first scratch/dent and a traumatic experience for my son as well.)
4.  We both want it to be a long time before we need a complete overhaul.

Here's to a smooth road ahead of us!

Clinic here I come...

Well, I'm putting it off no longer and am heading off to clinic tomorrow.  I need to meet with my team and decide what to do about my insurance's latest trick.  Since my colonization with MRSA in 2009, if not on IV's then I have to take Zyvox (Lineazolid) every other month to keep it in check.  Well, I decided to try and push it out this last time to 2 months since I was feeling ok and I really wanted a chance to get a better handle on my continual yeast infections.  My tongue had gotten very sensitive with heavy fur in some places and raw patches in others and this despite eating yogurt, drinking keifer, and taking acidopholous (spell checker doesn't even know how to spell that so I don't feel too bad if I did get it wrong.)

I'm not sure if my absence from taking the medication was an issue but for whatever reason my insurance denied coverage for the prescription even with a prior authorization in place.  Crum...crum...crum.  "Hey insurance company dudes, I know that this rx is over $5,500 for a month's supply for you but that is much cheaper than your share of a month of IV's or a hospital stay.  Come on, think it through people.  It's not like I get my jollies taking this stuff either--it makes me feel yucky--but the fact of the matter is that it works so I put up with it.  I wish you would too."

While I am there, I am also going to have them take a good look at my ribs.  Once I finally got the two ribs on the right side back in place and feeling better a couple of weeks ago, the ribs on the left decided it wasn't fair for the rightys to get all the attention so they began to put up a fuss of their own.  One more trip to the chiropractor later I could lay down and sleep without sharp pains waking me up every time I rolled off my right side.  The treatment helped and the muscle spasms went away but the initial place in front where the rib shenanigans began has not gone away.  I think I'll ask for an xray just to see if nothing is cracked.  Crazy stuff.  I don't know if other cystics get rib pain issues but they are not very fun.  It is kind of funny though that it's in to April and my only "medical expenses" so far this year have been chiros--a weird kind of blessing I guess.

Anyway, hopefully my pfts will be somewhere near baseline and it doesn't hurt too much to do them properly.  If I am going to pay to see the docs, I want to get all the bang for my buck I can get.

Today I finished binding a baby quilt I made.  I'll try to post a picture of it after I get home tomorrow.

My joy is full...

Today I found out something wonderful I've been hoping and praying for will be coming true.  At our LDS General Conference held this morning, it was announced a temple will be built in Fort Collins, Colorado.  I AM SO EXCITED!  It was one of those moments when you are so surprised and happy that the tears come and you experience pure joy.  Overwhelmed with emotion, I cried and cried.  My mom called and I cried.  I called a friend and cried.  I called my sister-in-law, who also lives in Fort Collins, and cried.

I love attending the temple and now since I am at an advanced age (can't believe I said that) and have the time, I would love to be a temple worker.  But that has been impossible for me to consider at the Denver location.  By the time I figured in travel duration (3-4 hours in regular white-knuckle traffic and more if traffic is heavy or there's an accident) plus adding the temple shift itself, I would not only be exhausted but my O2 wouldn't last long enough.  

As it is now, it can be difficult to just fit in a session.  In order to get treatments in before a morning drive to attend the temple, I must wake up about 6 a.m. which can be extremely hard to do if I've spent the night coughing up a lung. Despite that, getting up early in itself wouldn't be so bad except once I'm sitting in the peaceful, quiet room I have to fight to stay alert.  It is so frustrating wanting to be awake and attentive and you find your head bobbing despite all your I-must-stay-awake tricks.  

Now my goal is to stay healthy long enough so that I CAN be a part of this new temple.  I am ready to grab a shovel and start digging myself just to speed up the process...a process that can take several years to complete depending on land availability, zoning approvals, and then construction with all its inherent delays.


One thing I don't have on my side is time so I'm very impatient when it comes to waiting for future events.  Long-term thinking/planning is something, as a cystic, that is hard for me to do because eventually my mind works its way to "what if I don't live long enough to______" and I don't like going there.  And with my health getting progressively worse, my "future" time frame seems more restricted than ever.  Heck, at this point I don't even like planning more than two weeks in advance because I don't want to be disappointed again when things don't work out because I'm sick.  So here's to speedy construction workers (if there is such a thing) and cooperative weather. 

For my bloggy friends who may not know much about our temples, basically, in the temple we are taught, we make covenants, and we are promised blessings. We receive ordinances that enable us to live in the presence of God.  For more great information about temple worship you can go to http://lds.org/church/temples.

Just can't get this smile off my face!  

Denver Colorado Temple - my current closest temple

Idaho Falls Idaho Temple - temple I was married in