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Showing posts from 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!


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!

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 par…

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…

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.…

Anyone out there?


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  ;)

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:
Afterwards, the concierge got us tickets for Jimmy Kimmel!  So, we waited …


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…

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 kn…

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!! 

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 appointmen…

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 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…

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!!