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.