Wednesday, May 25, 2016

The Not-So-Sexy Side of CF

Unfortunately for me, I forgot my pills at lunch yesterday.  So, that means I left my insufficient pancreas to do a job it can't.  This thing happens from time to time...I forget to fill my little pill case I keep in my purse.  (Side note: I still have my very 1st pill case - so it's got to be 20+ years old!)

So, I was out to lunch and reached for my pill case to find it empty, instantly remembered taking the last pills out of it when we went to dinner the other night.  Damn!  I was an hour away from home (visiting my mom), so I figured I'd just run to her house and take some after we finished.  (Another side note: I keep pill bottles at my frequently visited locations....mom's, dad's, camp, Matt & Brandy's...).  So, I run inside and NO PILLS. Damn again!  

Knowing I'd have to wait an hour to be home, I just said heck with it....let's finish what we wanted to do (hit a few shops) then I'd go home and suffer the consequences later.  Surprisingly when I got home, I remembered to take a couple pills...I took 2 being that it was several hours later, and I filled up my pill container.

All was good so far.  Being a crappy wife, I didn't cook so we went out for dinner too.  I had pills then - yay!  I took an extra in hopes that might help even out what I missed earlier. 

All was well til about 3am.  Woke up and ran to the bathroom.  Eek!  After a while in there...I headed back to bed only to lay awake unable to sleep (too much stuff running through my mind).  Then, I got up at 7:30am as usual to take care of the dogs and head to the gym.  Just before walking out the door...I had to b-line to the bathroom again.  Nearly was late to class but I made it.  Most of the day has been good, some lovely gurgling but managed to hold it in.   Well, til about 5ish...perhaps the vest shook it out of me...lol.

So, definitely TMI, but that's life with CF.  Pretty days, ugly days, and pretty ugly days.

Hell, I didn't even get into the coughing up mucus!  Nothing like being somewhere when you cough up something...what do you do? Option 1 - hope you having something you can spit it out into or Option 2 - swallow.  Gulp.

Will likes to say that my team CF Stinks doesn't just mean that having CF stinks....it literally stinks.  Don't want to follow a CFer into the bathroom!  Fortunately for me, Will doesn't get grossed out with me :)  He's a keeper!

Friday, May 20, 2016

Rant

Just wanted to take a moment and rant...sorry!

I've been annoyed the past couple weeks with doctor offices and the need to reschedule.  Thankfully, its not my CF clinic giving me issues....they are fantastic!  Let me make a disclaimer....I'm not one that changes appointments often...99% of the time I make whatever is planned (a year in advance) work...even if I'm inconvenienced.

First, I needed to reschedule my dermatologist appointment at the beginning of May.  Well, guess when the next appointment was?  JULY!  2 freaking months later.   Chapped my ass.  I took the next opening and will make sure I plan my life around that day.  Heaven forbid something come up.

Next, I needed to reschedule my lady doctor appointment that was this week.  So, I called to see if I could change days or maybe come the next week or so (don't want to be too far off my annual schedule).  Guess what?  No can do...booked all summer long!  How the hell is that possible? So, I kept that appointment and rearranged my life.  Need I mention that my appointment was the 1st week of May and they called me the week before to change it.  I had made plans to be at THAT appointment.   Then, while I was at my appointment, I heard a receptionist tell someone on the phone that they were booked until July 2017.  Is that even possible?  Apparently Aiken, SC needs more OBGYNs....holy cow!  So, I have my May 2017 appointment scheduled and in my calendar!!

Any who...why do they book a whole year in advance?  I have no clue what I'm doing tomorrow let alone a year from now.  So frustrating!!!

Then...I'm the person that generally shows up early (like your supposed to)...only to wait an hour before being called back.  Good grief.  My patience go very quickly while in a waiting room.  I'm an easy patient...in and out in like 10 mins.  Why can't they just get my over with?!!

That is all!  Enough ranting...I feel better :)  Happy Friday to all...enjoy your weekend!

Thursday, May 12, 2016

Pupdate


I'll begin with a cute pic of my angels!
Happy Cinco de Mayo!!
Two weeks ago, on April 28th, Sarge and Stella had their bi-annual check up.  It was perfect timing because Stella has been acting different for a few days and I wanted to talk to the vet.

First off, Sarge was great!  All his tests came back just fine! His heart was perfect, eyes good, and he behaved for the most part.  Boy doesn't like being on the exam table and he always tries to jump off.  Then, he begs for treats! Crazy thing.

Stella checked out good to! Heart sounded fine, eyes good and all that stuff.  But, we noticed she has been panting a lot more lately.  Granted I know its hot outside. But, she's always been the athletic one and could run and play longer than the boys.  She seems to get winded and overexerted way before them.  To see her panting when the boys aren't is definitely concerning.  She even panted in the office in a relaxed state!?!  We talked about a few ideas...maybe an allergy or could be something more serious like heart problems, thyroid, adrenal issues.  

So, she was put on Temaril to see if that helps.  If its an allergy or reaction, that would help calm it down.  Unfortunately, after a week, I didn't see any change or improvement.  We were at camp last weekend where is was much cooler and the poor thing still panted.  Our fabulous vet called to check on her and we decided to bring her in for some testing....to make sure its not a cardiovascular issue.

Will dropped her off bright and early this morning and I picked her up about 2:45pm.  I met with the vet to go over the results.  Good News - its' not cardiovascular!! Her EKG and x-rays looked good to the radiologist and cardiologist.  However, the cardiologist said there may be some signs of bronchitis and pulmonary fibrosis.  Additionally, we have not ruled out an adrenal disorder, like Cushing's.  So, we will keep close watch to see how she behaves/breathes.  In a month, we can take her to test for Cushing's...have to wait until the Temaril is out of her system. 

So, please send positive thoughts for my Stella girl.  She is zonked after a busy day at the vet!
Sleepy girl
And last, but not least...T-Bone.  He's doing good.  His rash on his belly seems to be clearing up again - yay!! He was extra sweet this morning and was giving Sarge kisses! What?!  I think my heart nearly exploded with all the love ;)

Here are a few pics from camp!
Sarge not wanting Stella to get love!
My boys!
Someone is loving the couch! Uh oh!
"Mom, can we please come out and play?!"


Tuesday, May 10, 2016

CF Appointment

Greetings! Today was my quarterly CF appointment.  I was looking forward to going to check in on some things....especially PFTs and sputum culture.

A little bittersweet on the PFTs...they are pretty much the same as they were in February.  I was hoping to see a little improvement, but I'll take steady and stable.

                        5/10/16            2/2/16        6/2/15
FVC                 96%                 95%            89%
FEV1               84%                 84%            81%
FEF 25-75%    57%                 60%            61%


I did miss doing my vest since last Tuesday...I was in WV Wednesday through yesterday.  I had the blasted machine with me, but never sat down to do it.  Shame.

I did bring up how my voice has been raspy.  It comes and goes...and has been happening since August/September.  I have to clear my throat a lot.  So, she's referring me to an ENT to take a peak and see whats going on.  I told her they will have to sedate me if they plan on sticking anything up my nose or down my throat - yikes!!! I'm freaking out just thinking about it.

We talked about me being on Fosamax and some effects that are reported when using for long term.  So, I'm going to take a break from it since my last bone density scan was stable.  July will be 3 years that I've been on it.

I also told the good doctor about my knees popping a lot.  No plan for that but I told her I was thinking about taking a joint supplement...like I give Sarge ;) LOL

I also complained about my breakouts I've been having....she said that's not CF's fault...lol.  I'll be visiting the dermatologist in July.  In the meantime, I've started using Rodan and Field's Unblemish line.  Fingers crossed!

That sums up my visit!  Got to chat with the respiratory therapist and dietician but nothing new to report there.  They told me to keep up my exercise and taking my enzymes/vitamins.

Hopefully in a week or so I'll have the results from my sputum culture!

Monday, May 2, 2016

Great Strides 2016

The Augusta, GA Great Strides walk is a wrap for 2016! 

If you know me, I can make everything into a competition...so I was thrilled when we were the top fundraising team!!  We raised $13,325 as of today!!  Wow - that is a huge number...our biggest yet!  The Augusta events are projecting to raise over $63,000!

Thank you to these wonderful companies for supporting CF Stinks:

Kelley Drye & Warren, LLC
Securitas
Homestyles of Greenwood
Life Wireless
SK Transport
Installation Solutions, Inc.
Cooper's Lawn Care
Easy Wireless
CGM
Peaches Uniforms
Agent Resource Group


Here are some pictures from our day:

These wonderful folks are who run the CF studies I participate in!

CF Stinks 2016 
Will & I with our team banner! 
Group shot of us walking

My beautiful sorority sisters that came out to walk (minus 1).

Walking selfie

It was a gorgeous morning!!  My team was asked to lead off the walk as the top fundraisers - pretty cool!! 

I love looking at the pictures and seeing how my team has changed throughout the years.  I have my faithful bunch that never miss!  The biggest change being all the kiddos!  I love that they join in...even though they don't understand what's going on, they happily join in! 

We concluded the hot day with a fiesta back at my house...complete with food, cocktails, corn hole and lots of laughs.

So, thank you sooooo much to my family and friends that came out on Saturday.  Your presence there means more to me than any monetary donation ever could!

Here's to 2016! 



CF Appointment 3.14.19

And just like that, another 3 months has passed by.  I headed to my CF appointment on Wednesday, March 13th. I saw lots of my favorite peo...