Tuesday, February 26, 2013

Bad bad CF patient!

I am a very bad CF patient.


Well...........I haven't done my vest since I got out of the hospital, almost 2 months ago!


I know I know....the first few weeks I was sore from the port placement.  Then it turned in to me being scared that the vest would hurt the port anyway.  Then it just got out of hand.

BUT I am writing this post as I sit hooked up to the vest finally!  It is not a pleasant feeling, and I don't know if round one after not doing it for 2 months will last the whole 20 minutes.  I hear in time it will get less awkward and less irritating so that means I need to keep at it!

My port is still awkward for me.  I am extremely aware of its presence at all times of the day.  So the vest was just scary!  I can't even wear a bra because it annoys the site.  Which, thankfully, I was "blessed" with very tiny boobs and I don't need to wear one!

Lately the old lungs have been very sore and not happy so I decided I needed to suck it up and attempt the vest again.  It can't hurt....well....you know what I mean!!!

Saturday, February 23, 2013

New Blog Title

For those of you who may have noticed, I changed the name of my blog.  "My journey with Cystic Fibrosis" was too vanilla for me.

From now on I will be the blogger on "Mastering the Art of Breathing, One Stitch at a Time."

I am happy with this new title!  And a huge thanks to all my wonderful friends on facebook who helped me pick a winner!!!

I will be posting a picture for behind the title once I have one I like.  There are ideas floating around my head that I need to work on.  Stay tuned!

Friday, February 22, 2013

Early Copy of a CF Memoir

I was asked to read a new book that is coming out on the market in April.  Its written by a woman whose husband has Cystic Fibrosis.

I am honored and thrilled to get a chance to read it before it hit shelves!  But my own full review will not be posted online here until it does.  Super exciting!!!

Tuesday, February 19, 2013

Charity's TEDx Video

Piper over at A Matter of Life and Breath had a guest blogger today.  Her message was simple.  Be an organ donor.

Check out Piper's blog for her guest blogger and this video of Charity:

Discourses from the Undead: Charity Tillemann-Dick at TEDxMidAtlantic

Saturday, February 16, 2013

Our Wedding

I got so wrapped up in life after getting married I never posted any pictures!!!  How horrible of me :(

So here ya go!  A few pictures of the wedding and a few from the honeymoon...

"I do"

 Love the veil....and the groom!

Dress and flowers, and the hankie from my Christening

I love my dress so here is another one!

Kisses for him

Magic Kingdom

 Portable O2 made it into a few pictures!

 Micky <3

Best shot!!!  The whole wedding!!!

Friday, February 15, 2013

New Name

I am debating giving my blog a new name.  In case you hadn't noticed, I revamped it some.  But now the name seems so generic.

Should I rename it?

Should I leave it alone?

Should I go to bed instead of thinking of silly things at 1am?

Tuesday, February 12, 2013

Groundhog Day

I wanted to write this long post about how I am feeling lately.  But I just don't feel like it.  And that statement alone sums it all up....I am in a funk....I need to get out of it.  I am blah with a capital B L A H.

I think a lot of it has to do with the lack of female body parts, and the lack of being able to see someone about it.  My surgeon told me I have to see my PCP, but I can't get in to my PCP until after May!  If I didn't like her so much I would ditch her and find someone new....P wants to anyway.  Maybe after February I will consider it.

If you ever saw the movie Groundhog Day, that is how my life feels right now....same thing day in and day out.  I HATE IT.  I need change.  I need something different.  Not P, definitely NOT P.  I love him, he needs to stay where he is.  But the rest....I dunno.......


Thursday, February 7, 2013

Breathe Decal

The other day I received my "Breathe" decal from Jamiebug!  I LOVE IT!  It looks fabulous on my laptop, and now when I am in the hospital and am using it, people will see it!

I also ordered a "Donate Life" decal for my car but I have not gotten that one on it yet.  Once I do I will take a picture and post it I promise.

Hop on over to her page and get some for yourself!  They help pay for her BugHugs which help transplanted patients while in the hospital.  Wonderful project by a wonderful Cyster!

Friday, February 1, 2013

Vanilla CF

What is Vanilla Cystic Fibrosis?

My old CF doctor used to tell me I had Vanilla CF....meaning I was very low key, by the book, nothing out of the ordinary.  As I have gotten older I have gotten worse, but there have been no sudden drops which I was unable to gain back.  I haven't really scared anyone (besides that PICC issue a few years ago!) with a horrible case of anything.  As it stands now, Cancer is pretty much more worrisome to me than CF is.  Probably unjustly so, but that is how I see it.

Sounds pretty decent right?

So why do I feel so undeserving of it?

What do I mean?

Why do I feel like it isn't fair that I seem so "healthy" and I have friends out there struggling every day?

Or why do I feel like it isn't fair that I seem so "healthy" when I have friends who are dead?

Every day on Facebook there is another friend who is asking for prayers because their health is wacky.  Or another who is waiting to hear if their issue is their body rejecting their new lungs.  Or yet another who is on the mend from months of being in a shitty state.

While I thank God that I am healthy, I also wonder, why me?  Survivor's guilt perhaps?

Just some late night thoughts.....

And to lighten it up (HA)....I chopped my hair off today!  I am donating it to Locks of Love!!!  I know I know, Pantene doesn't charge for their wigs, but I color my hair and Pantene won't take permanent dyes, while LoL will.  12" chopped off!  I feel so naked without my hair!!!