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CF Stuff

Wednesday was my quarterly CF appointment.  I'm happy to have a good report!  I had my annual blood work done too, but not the glucose test.  I had a 1pm appointment and I wasn't fasting all day - hell no!  So, I'll do it when I have a morning appointment in August.

I made the rounds with the whole team: dietician, respiratory therapist, psychologist, doctor, etc.  Is it strange to like going to the doctor? I truly enjoy my CF care team and enjoy catching up like they are old friends.

Fortunately, I didn't have any problems to report (just a little sinus stuff, but no big deal), it was short and sweet.  Here are my PFT results!

                         5/16/18     2/14/18    5/9/17     5/10/16    6/2/15
FVC                    99%         103%       99%          96%        89%
FEV1                  91%          95%        87%          84%        81%
FEV25-75%       73%           79%       62%          57%        61%

They are down a smidge, but nothing to be alarmed ab…

#35daysofdonating

Thank you all for the interest in my #35andstill alive challenge.  As I stated in my previous post, I want my birthday to celebrate something other than me.  I want to recognize organizations that help others and people in tough times.

Will has been a huge support and encouragement to me as I've started this challenge.  I'm so thankful to have him in my corner.

I'll be continuing to donate $100 to one organization/person a day all the way up until my 35th Birthday!  I've added links to each place I donate so that if you too wish to support the cause you can.

Hopefully my donation will lead others to donate what they can.  Please share any suggestions with me!!!

Day 1: Cystic Fibrosis Foundation Day 2: Prayers for Avery Day 3: Aiken, SC SPCA Day 4: National Eating Disorder Association Day 5: Bullies to the Rescue Day 6: Canine Companions for Independence Day 7: Pittsburgh Melanoma Foundation Day 8: Circle of Sisterhood Day 9: Rachel Winegar GoFundMe Day 10: Spina Bifi…

35 and Still Alive

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I'm quickly approaching my 35th birthday and this year I want to do something a bit different!  Don't worry, I'll still celebrate birthday month 😉!!  I want to make my birthday about something more than me, about doing good and celebrating life, about being kind, about helping others, and about spreading love.

So, I have decided that for 35 days leading to my birthday, Will & I will make a $100 donation to an organization, a charity, or person/animal in need.  While I have some charities dear to my heart that I will contribute too, I also need input from you all.  If you know of something/someone that could benefit from a donation, please share that with me.  I know there are way more than 35 causes that could use support and it will be hard to select.  But I'm greatly looking forward to helping those I can.

Let the fun begin!! And yes, you mathematicians...it will be a total of $3,500!!



So, for Day 1....


The Cystic Fibrosis Foundation!!  I'm sure this isn…

Knocking out the Bucket List

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CF is hitting all too close to home lately.  I know of someone that just had a double lung transplant.  I know of someone that was told they weren't approved to get a lung transplant.  I know of a little girl that lost her battle.  Why is CF so cruel?

CF will not defeat us.  We all fight.  We fight to breathe everyday.  We fight to spend every day possible with the ones we love.  We fight so that others can see hope.  I will not stop fighting.  I will not stop living.  For those that aren't able to do the things they used to do... I carry you with me in spirit as I live.  As I  breathe each breath.

Many people have bucket lists.  But how many of those people truly aspire to make those bucket lists come true?  Well, I'll tell you this.  I do!! I've come to realize as I get older (approaching 35 in June) just how fragile life can be.  I don't know if it's CF that makes me appreciate the little things, but I sure try my best to be grateful for everything.  Maybe …

Life in Pictures

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As usual, I'm slacking with my blog.   So, in short...I'm doing great, feeling fabulous, managed not to get sick on the 8 flights I had in February (that's a miracle), and have just been busy enjoying life.  So, to catch you up on my busy 2018, here are some pictures!
January - weekend at The Greenbrier in White Sulphur Springs, WV to celebrate the best brother-in-law in the world turning 40!!!



At the beginning of February we headed to South Padre Island, TX to visit Uncle Charles and Aunt Aura.  It consisted of lots of fun and a trip to Mexico (and many pictures that I can't post as not to incriminate myself). 😜


Then after a few days at home, I headed to Indiana to visit my brother, sister-in-law, nephew and niece for a week!





And then to kick off March, me and my girlfriends took a trip to St. Augustine, FL!


And of course, my pictures would not be complete without my pups!!

CF Appointment

My 1st appointment for 2018 is in the books.  And I'm happy with my report!  It's been forever since I've had someone tag along to an appointment, but my mom was free and able to join me!  It was pretty quick, just under 2 hours.

I met with my social worker first to do the annual updates.  They ask about finances, stress, work, family life, insurance, etc.  Thankfully, I don't have anything to complain about.  Then, my PFTs were done before seeing the Psychologist, then the doctor.  My dietician popped in to say hello, but I didn't have any needs and my respiratory therapist was out.

Having a psychologist on the CF Care Team is a fairly new thing.  And I really like ours - he's a West Virginia guy, so we get along great :)  I'd talked to him about my memory issues.  I don't remember shit sometimes.  So, he did a cognitive exam with me that took about 15 minutes.  And, I passed with 100%! Go me!  I just worry about forgetting things being that my Pap had…

CF Updates

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Finally going to share my November appointment.  Being that is was nearly 2 months ago, I don't remember much about it! Here are my numbers:


11/17/178/9/1711/1/1611/3/15FVC99%101%99%98%FEV189%89%89%89%FEV25-75%66%61%69%68%
Looks like I'm holding pretty steady! Can't complain about that!!

I'm due to start Cayston this weekend, so my shipment of CF goodies should be arriving on Friday - yippee!  It's that time where I'll get my Cayston, Zenpep and Hypertonic Saline.  You're welcome insurance!😉

I'm feeling good.  I managed not to get sick while Will was down with the crud. Thank heavens!!!  I'm getting over the non-working out, junk food eating slump from the holidays.  I've got my motivation back.  I won't lie.  I skipped out on Monday because 1) I dreaded the spin bike and 2) I snoozed too many times (probably because of #1).  But I went on Tuesday, Wednesday and today - and had great workouts.  My stamina is still pretty good, as long as I&#…