Tuesday, December 22, 2015

November Catch Up

Not only did I blow past October, I skipped most of November too.  So, here's what I did :)

1)  Will traveled a lot for work, so it was me and the pups.




2) We closed down our cabin in WV for the winter.  We also put up our duct work in the new cabin - I learned a lot!!



3) I completed my CF Study :(  But, it is nice not having 3 more pills to take a day!


4) I had my CF appointment (read here) and then an allergic reaction (read here and here)!!


5) Turkey Day!  I cooked at the house for 4 of us.  It was nice and small :)  We tried the oil-less fried turkey.  It was good, but not near as delicious as the regular old fried turkey!






6) And Will turned 35!




I think that was just about it!



October Catch Up

Looks like I completely blew past October and never shared about the exciting adventures!  So, here's a quick catch up!

1) I went to Indiana and visited my brother, sister-in-law, nephew & niece!  As usual, I loved every minute with them all!





2) I got another sister-in-law!! Will's brother, Brent, married the wonderful Julie!  It was a beautiful day (rather chilly), but perfect!  They are so happy and I couldn't be happier for them.





3) I had another visit at for my CF Study.  Rode the stationary bike, did lung functions and all that good stuff!  Felt like it was a great visit.  Only 4 weeks left after that visit.

4) Sarge & Stella had their bi-annual check up!  Thankfully, all good things to report!  Stella weighing in at 46 lbs and Sarge at 48 lbs.  T-Bone didn't have to go, he's on a different schedule.  I can't imagine trying to corral 3 bullies there!

Monday, December 14, 2015

New Video

I was excited to see the CF Foundation released a new video today!!

Click here

Hope you enjoy :)

Friday, December 11, 2015

Recovered!

Finally, most of my bumps from the allergic reaction are gone - woohoo!  There are a few spots here and there that I'm hoping aren't going to scar.  I took all last week off from the gym to give my body all the relaxation it needed to get better.  But, I was anxious to get back in this week.

Happily, I'd say I feel 100%!  I've gone to the gym all week and have been busy finishing my Christmas shopping and getting packages mailed off to family.  I love being so prepared this year!  I need to make a better effort every year to get done early.

Hoping everyone out there is well!

Wednesday, December 2, 2015

Can't Say "No Allergies" Anymore

Unfortunately, I learned the hard way that I have an allergy!  Turns out I'm allergic to Sulfa - which is in the Bactrim I've been taking to kill off the Stenotrophomonas Maltophilia (read about that here).

I noticed a few bumps on Saturday, but wasn't overly worried.  I was sore, mostly my back, but figured that was from a good and hard workout on Friday.  Then, Sunday, I woke up covered in red bumps on my arms and legs - eek!  They weren't itchy, thankfully.  The aches really kicked in and I was hobbling around the house slower than my 90 year old grandfather.  I ended up going to the local urgent care facility to see what was going on.

The doctor knew instantly that I was reacting to the Bactrim.  I had had no other changes in food, surroundings, etc.  I was told to stop with the medicine immediately...I had taken 41 of the 42 pills prescribed.  Kind of crazy that it took that long to show signs of an allergy :/  But, apparently, that isn't uncommon for this particular drug.

So, now I'm on Prednisone for 6 days!  And man, that is making me HUNGRY!! I can't stop eating...lol.  I took some Ibuprofen for the pain and the Prednisone and slept like a baby on Sunday night.  I woke up feeling like a champ on Monday, but knew I shouldn't push myself too much.  I skipped the gym and put up Christmas decoration :)

My bumps are going down - woohoo!  I'm hoping they will be gone soon so I don't have to go out in the 70+ degree weather in long sleeves...lol.  It's too hot for that!

I'm thankful I didn't have any respiratory issues with the allergic reaction - that's scary to think about!  Now, I just have to remember to say I'm allergic to Sulfa on all my medical forms!



Wednesday, November 18, 2015

CF Appointment

Finally something CF related ;)

I had my 4th quarter appointment on November 3rd.  I was scheduled to have my annual blood work done that day.  With an afternoon appointment, I held off on the glucose test...I didn't want to fast all day - this girl has got to eat!  But, I'll get it done in the next couple weeks.  I know its fine, so no real rush on my end.

I was happy, I was in and out pretty quick.  Here's the outline of my visit:

- Had 8 vials of blood drawn - yuck!  Thanks heavens I did eat or they would have had a passed out patient.
- Checked in at clinic and got to my exam room
- PFTs were done
- Respiratory Therapist came in to discuss PFTs
- Coughed up a nice specimen for them to test
- Social Worker popped in to say hello - fortunately I didn't have any needs with her
- Doctor came in - talked, did exam, etc.
- Out of there!

So, how were my PFTs?  Better - yay!! I finished Cayston on the 31st of October, so I definitely think that helped boost them.  Although, I did have a little tickle in my throat and coughed a bit.

                            11/3/15        8/4/15        12/10/14
FVC                       98%             94%             97%
FEV1                     89%             83%             85%
FEV25-75%          68%             57%             52%

I shared about my voice issue I've been having since the last appointment.  One day I'm hoarse, then the next I'm fine and then it starts all over again.  Fortunately, I was a bit hoarse that day and they could tell!  I hate going to the doctor when the thing that is wrong with you isn't wrong that day.  She looked in my throat and nose and didn't see anything other than my throat being just slightly red.  Lungs sounded clear too!  So, it's a mystery as to why my voice keeps going in and out...its still happening too :/

We thought maybe the HTS had been irritating it, but I had missed it a few days prior to my appointment (we were in WV working on the cabin and I didn't squeeze it in...but I did get some exercise!), so that didn't make much sense.  And all the other times I had been on it continuously.

I digressed - sorry.

Anyway, I left happy with my PFTs and planned to take Claritin to see if that helps as I have been going back and forth to WV a lot which exposes me to a lot of temperature changes and different allergens.

BUT....I was contacted by clinic on Friday the 13th!!  Coincidence?  My sputum cultured a not so lovely new bacteria,  Stenotrophomonas Maltophilia.  WTF is that?!?!  So, of course I googled and it doesn't sound fantastic.  Apparently this bug can be hard to treat.  I already have pseudomonas aeruginosa living in my lungs, and now another one...oy vey!

So, what are we doing about it?  How do I get this crap out of my lungs?  I was given a prescription for Bactrim to take 3 times a day for 14 days.  So, praying this does the trick!

I won't lie, I felt a bit defeated hearing the news of the new bacteria.  All I could think about was, is this the bug that will knock me down for good?

No!  This stupid bug won't win!  I'm gonna do everything I can to kill it off!  I'm just curious about where they heck it came from?!  I just don't know!




Wednesday, November 11, 2015

Who Am I?

I'm not sure where this thought came from, but I was drying my hair and started thinking about who I am and thought I should share.  Here is what I came up with:

I'm kind of shy before you get to know me, but when I finally have a comfort level - look out.  I'm not one to speak my mind openly, I keep my opinions to myself.  But then again, if you are one of the handful of people that know me backwards and forwards, you KNOW my opinions too.  I tend to ramble when I talk, especially if I'm excited or nervous.  If you have food in your teeth, I probably won't tell you...I want people to tell me, but not really cause that's kind of embarrassing and awkward.  And yet, after I eat, I usually have someone look and tell me if they see anything.

I've never met a baby that I didn't love (even the ugly ones).  And yes, I do believe there are ugly babies & kids.  I tend to keep that thought to myself, but I'm definitely thinking it.  Kids kind of annoy me.  There are many kids that I adore (especially my nephews and nieces), but stranger's kids...not my thing.

People in general kind of suck.  That's probably why I love my dogs so much.  I don't understand why people lie, steal, use drugs, cheat, kill.  It frustrates me.  However, I generally see the positive in people when I meet them.  I always hope/expect that they are good until proven otherwise.

I judge.  I don't like that about myself, but I do it.  I try to think of something positive to counteract any negative thoughts/opinions.

I'm bitchy.  Usually Will and my mom see that the most - sorry :(   I'm stubborn.  I like things to be done my way.  I don't like when plans change, even if I'm the only one that knows the plan.  I tend to make plans in my head a lot.  I hate when people back out of commitments...it's just shitty.  So, I try very hard not to be that person.  I won't lie, I know I've backed out and trust me, the guilt eats me alive.

I curse...A LOT.  I do know when to watch my language and I do fairly well at it.  I find it funny when Will tells me to watch my language... I'm still holding my ground that I didn't curse as much until him.  I'm very hard to offend.  I can't really think of a time I was offended.  I've had my feelings hurt, but that is different (in my mind).  People are WAY to sensitive about everything these days.  Grow some tough skin and suck it up like the rest of us do.

I love my dogs.  I love all animals.  I'd do anything in my power to keep an animal from harm.  I know people get annoyed with the overly animal loving people like me when there are humans that are suffering from hunger, abuse, etc.  I'm not saying I don't care about that too, because I do.  I just chose to focus my efforts on the animals because they don't have a voice.  I hit a squirrel once and had to pull over because I was crying.  I know, extreme.  I'd do anything to protect my bullies.  Why do you think I always have a gun handy.

I love shooting guns.  I never did until Will and I'm so thankful he taught me how to properly use a weapon so I can defend myself...Lord willing I never have to.  But, I'll be ready.

I'm not a tom boy, but I'm not a girly girl.  I don't hunt, in fact I hate hunting.  I understand the need for it, but I still don't like it.  However, I do like blood and guts, so somewhere I must have some wires crossed.  I'm not one that loves to spend the day shopping for clothes and shoes.  I wish clothes would magically appear in my closet that fit!  I'm not saying that I don't like nice things or don't ever want to go to the mall, I do, just not very often.

My favorite times are when Will and I hop in the truck and just drive around.  I love sitting around the kitchen table or in the living room with family and friends, just talking.  I wish I would have liked that more when I was younger because I probably would have learned a lot.  I love my family.  I love my dear friends.  Words can't express how much they mean to me.

I'm organized, yet disorganized at the same time.  I do not like being late...for anything.  I like to help out.  I think everyone should carry their weight and not let someone do all the work.  I'm emotional, I'm scatter-brained, I'm a procrastinator.  I'm me, and I'm good with that.


Wednesday, October 28, 2015

Anyone out there?

Hello???

I'm still alive and well...just busy doing a million and one things.  I'll update soon!

Hope everyone has a happy and safe Halloween!! Feel free to send me any Sour Patch Kids  ;)

Thursday, October 1, 2015

Ellen & L.A.

It's hard to believe that my L.A. trip is over already.  I had been looking forward to it since my aunt and I planned it a few weeks ago.  And it's over :(  BUT, we couldn't have had a better time!!!

I arrived in L.A. at 10:45am on Monday, Aunt Arlene got in a little earlier and waited for me at the airport.  We then headed to our hotel, Loews Hollywood Hotel.  Being early in the day, our room wasn't ready so we left our bags with the Bell Desk and asked the concierge for some suggestions.  We got hooked up!!!  We did the touristy thing with the tour bus around L.A.  It was neat!  I enjoyed seeing the area and some celebrity homes.  We managed to get honked at numerous times and even had a few people shot us the bird!  I can only imagine how annoying it must be for people to live there and see these buses loaded with nosey people.  Sorry to be that person :/  We did catch some interesting sites:
From Pretty Woman - where Richard Gere shows up to rescue Julia Roberts at the end
Hollywood sign in the distance
L.A.
Aunt Arlene & I with the Hollywood sign by my head 
This is supposedly Justin Timberlake & Jessica Biel's fence!
Obviously, Rodeo Drive!
Afterwards, the concierge got us tickets for Jimmy Kimmel!  So, we waited in line for over an hour and a half.  Rather ridiculous if you ask me.  But, it was cool to see the show.  We saw Matt Damon, Dr. Phil & Brett Eldredge performed!!


Then, we headed back to the hotel to get checked in and freshen up so we could go get a bite to eat.  We enjoyed a nice dinner at The Grill on the Alley, which was by our hotel.  We were exhausted from such a busy day so we were in bed by 10pm!
View from our room - Hollywood sign in the distance & the church you can see part of was used in the Sister Act movies, Wedding Crashers & many more!
Tuesday we woke up around 7:15am and got the day started.  We headed out to walk Hollywood Blvd. to see more stars on the Walk of Fame, Ellen DeGeneres in particular! We enjoyed a quick breakfast and walked our butts off!  We were back in the hotel and changed so we could head to Burbank by 11am.

Elvis & The Beatles
By the Grauman's Chinese Theater
In front of the Theater
 

WE FOUND ELLEN'S STAR!!


Dolby Theater

Once in Burbank, we checked in with security at the Ellen show and walked down the street for lunch.  We found this great little Italian restaurant, CiaoCristina!  YUM!!  I ate a big ole plate of Alla Vodka - I worked up an appetite from all the walking earlier ;)  We headed back to the waiting area for the show where we hung out for a bit.  They actually decided to start taping earlier then originally planned at 4pm, so that made the wait shorter!  We had to get in line and got our tickets to get into the audience.

The show was great! We saw Kim Kardashian, Tracee Ellis Ross & Jake Owen performed!!  It was a little hard to see some times because I had the Jolly Green Giant in the row in front of us...so I was constantly trying to see around him.  Short people should get a little benefit and not have to sit/stand behind someone over 6 foot tall!  Not cool!

The show is full of so much energy!  You are dancing and cheering the whole time!!!  I have no voice today as a result of my screaming :/  We were in the 4th row on the side nearest to tWitch!  It was amazing seeing him dance in person - I wish I had 1 millionth of his talent!  And for those curious, yes, Kim's rear end looks as big and round in person as it does in photos/on tv - lol.

It was great seeing Ellen in person.  I know she can't meet everyone, but it would be nice to be able to tell her how much I admire her and enjoy the show.  I look forward to 4pm every weekday, so I can watch and use my vest...who would ever think I would look forward to the time of day I use my vest?!  I love her love of animals, she's kind and encourages others to be kind.  She's just fantastic!

After, we went back to the hotel so we could freshen up and go eat.  (If you can't tell, eating is a priority when traveling with me ;))  That night we ate at Musso & Frank Grill.  It had an old mob-type feel & great food.  On the walk back, we decided to snag some dessert from Ghirardelli.  Then off to bed for an early departure.
How could you not stop for Ice Cream?!?!
I had so much fun spending time with my Aunt Arlene!! I love that we enjoying going places together :)  She's such a blessing to me and I have no clue what I would do without her.  I can't wait for our next adventure!!!



*Side note - my wonderful friend spotted us in the audience & text me this pic :)

































Wednesday, September 23, 2015

ELLEN


So, I'm beyond ecstatic to say I am going to the ELLEN DEGENERES SHOW!!! 

My super fantastic aunt and I are flying to LA on Monday for Tuesday's taping!! I can't wait to see the show live!!  Can't wait to put another check mark on my bucket list!

I just adore Ellen.  Her show makes doing my vest much more tolerable!  She's so kind and giving, plus funny!  Favorite show of the day - for sure!


Here I come Ellen!!!!

CF Study - 4 week mark

This morning was my 4 week visit to see my progress with the Antioxidant study.  I can't say I feel any better on them regularly, but definitely don't feel worse.  I feel like I have a bit more energy :)

We did the typical blood work, PFTs, arm ultrasound and max performance test.  I think I maxed out where I did last time.  I felt good during and after the workout.  One thing I wanted to share was on the PFTs.  While my FEV1 and FVC were about the same, they did a DLCO test.  

Per Wikipedia:
 DLCO or TLCO (diffusing capacity or transfer factor of the lung for carbon monoxide (CO),[1]) is the extent to which oxygen passes from the air sacs of the lungs into the blood. Commonly, it refers to the test used to determine this parameter. It was introduced in 1909.[2]


My scores were better this time around!  I had a 10.06 when I previously was close to a 13!  What exactly those numbers are, I don't recall, but I'm just happy its better (lower means better)!!

I'll continue the antioxidants daily for another 4 weeks and do what I did today all over again!

These are my Antioxidants - 1 of each per day

Tuesday, September 8, 2015

CF Study plus the rest of life

Just a quick update.  I've been meaning to post and have started to several times only to be distracted by something....the load of laundry beeping to be put in the dryer, a new email popping up on my screen, the phone ringing, a dog needing to go outside...the list is endless of the things that distract me and throw me off course throughout the day.

So, in short, I went back for the 2nd acute CF study (3rd visit in all).  I was given another round of meds and exercised.  Then, to study the long term effects, I was given a 4 weeks supply of the antioxidants.  I'll be taking these and going back on the 23rd for another exercise test!  And, I even got a little cash in my pocket for my efforts :)

Other than that, not much else happening.  Been spending A LOT of time in West Virginia working on the cabin.  I sure hope it will be done one day.  Sometimes it just seems like things take forever, and I sure don't like waiting.  I want what I want, and I want it now!  So, if you know any magical fairies that can finish a cabin overnight, please send them my way ;)

We enjoyed Labor Day up at camp.  The weather was gorgeous & we got to enjoy some time in the river.  The pups loved their swimming days!  Although, T-Bone isn't a fish like Sarge & Stella, he at least let his feet get wet this time.  I was a bad mom and didn't get any pictures of them - oops!

I seem to be having some sinus/allergy issues the past few weeks.  My normally high voice is a few octaves lower & kind of scratchy.  I feel fine, but am totally annoyed with the weird feeling in my throat of drainage (or who knows what creating the voice issue).  The most annoying part - I try to sing along to the radio & my voice cracks or dies out - ahhh!  Will was thankful on the 6 hour drive though - hahaha!  I've been taking some Claritin and that seems to help some.  My eyes aren't watering as much.  One day, it looked like I had been sobbing but it was just my eyes watering for some strange reason.  I've never had ANY issues in the late summer/fall with allergies.   Usually just March/April when the pollen is crazy in SC.  Oh well, one more quirky thing as I get older.

My stomach is rumbling and therefore distracting me from my rambling post.  So, I will go feed my face and see what shows I have DVR'd from our weekend away.  Ummm, any Bachelor in Paradise fans out there?!?!  Love those shows!

And speaking of shows, Ellen is back on!! Woohoo! I've been dying this summer without having a new episode to motivate me to vest.  So I was ecstatic to sit down at 4pm today & vest so I could watch a new episode of Ellen!!!

Bye for now ;)

Tuesday, August 18, 2015

Catching Up

Not much going on here...thought I'd take a minute to say hello and share some pictures.
I spent last week at our place in West Virginia trying to get some things done in the cabin.  Not much success :/

I did venture to Pittsburgh for a day (well, less than 24 hours really).  I got to eat my favorite restaurant Wings, Suds & Spuds...I mean, aren't these fries AMAZING!!


I even got to cuddle my niece and nephew while they were making a pit stop on their road trip:



AND, I got to visit my PAP!! 





Wednesday, August 5, 2015

CF Appointment

My appointment was Tuesday in Augusta.  I was anxious as I was coming back in 2 months rather than 3...since I was down a bit in June and put on an antibiotic.  I've been feeling great & doing my treatments, so I was hoping for some improvement in PFTs.   Here are the results:


                                 8/4/15         6/2/15           9/19/14
FVC                          94%              89%              111%
FEV1                        83%              81%              95%
FEF 25-75%            57%              61%              58%


I'm happy there was some improvement in FVC and FEV1, but as usual I want more.  I like last September's numbers much better.

So, they suggested I add another Hypertonic Saline in my routine.  HA!  I started Cayston today, so that's 4 breathing treatments plus 30 minutes vesting and at least 60 minutes of exercise a day...sure, why not add in 20 more minutes?!?!  Oh, they joys of CF.

Happily, all else checked out at my appointment.  I'll have all the annual blood work done next visit - boo!!!

Speaking of Cayston, I better get downstairs and do my 2nd treatment - oops!  Day 1 is always so easy to get behind on a treatment :/




Friday, July 31, 2015

Newest CF Study

I'm excited to be participating in a new CF Study with the Laboratory of Integrative Vascular and Exercise Physiology (LiveP for short)!!

This time the study is focusing on how antioxidants impact exercise in Cystic Fibrosis patients.  So, It will start with 2 separate visits in which I will be given antioxidants or a placebo and then exercise to determine the acute result.  After those, I'll take the medicine for 4 weeks and come back and test again.  Then do that 2 more times for a total of 12 weeks to determine the extended use impact.

My initial visit was July 14th.  I went in the afternoon and had all my initial vitals recorded (bone density, weight, lung functions).  Then, I max tested on the stationary bike.  I wasn't overly thrilled with my performance that day...my legs were tired!!

Then, I went back for my first of 2 acute visits yesterday (7/30).  I went in at 8am fasting - boo!!  They did an ultrasound of my arm and measured the artery with a cuff around my arm for 5 minutes, making it go numb.  There were lots of blood pressures taken and recorded from my arm, leg and neck.  I'm sure I'm not explaining all this to make a lot of sense medically...but it does :)  I did my lung functions, which stunk!! I randomly got a cough.  Then, I was given medicine (either the antioxidants or a placebo) and sat in a room for about 2 hours.  After that, I did the whole process again before getting on the stationary bike to do my max test.  I was pleased that I maxed out on the level above my initial visit - woohoo!!

I haven't set up my next acute visit yet, but I imagine it will be in the next couple of weeks.  

I really enjoy being a part of these studies.  Who knows, we may discover something that makes exercise better for us CFers.  I sure believe the Viagra made a difference (you can read that here).  

Dr. Harris is working on some pretty awesome stuff.  Can't wait for the next BIG thing!! Won't share all his secrets yet, but I'm STOKED!!!!!

I'll do better at keeping you all updated on this study.  Promise!

Bully Birthdays!

As you know, I love birthdays!! So, of course we have to celebrate our beloved 4 legged children :)

Sarge & Stella turned 4 on July 6th.  They were spoiled even more than usual, but we waited for their big treat until T-Bone's birthday on July 29th.

So, I went to the local pet store (Downtown Dog) and got 3 delicious looking treats, bought some party hats and headed outside!

To keep the peace, T-Bone enjoyed his snack in the yard.  When I handed it to him, he took off running!   Sarge & Stella enjoyed theirs on the screened in porch.

Oh, they make me smile!!

Birthday Treats!!
They can smell something yummy!
Impatiently waiting...
Oh, Sarge 






Sweet T-Bone :)

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...