A spazzy post by a Spaz

Good grief... It has been almost 4 months since my last post.  But I honestly wasn't inspired to write much.  Well, what I wanted to write about was angry and probably not worth reading.

I'm angry a lot.  It frustrates me, which probably makes me more angry.  And I'm not just angry about one thing.  A myriad of things can set me off.  Jeff got me a heavy bag for my birthday.  I saw that Mia (my friend the wedding coordinator gone chef gone lawyer) had one.  It's awesome.  I love using it.  It has been a million degrees here so I haven't used it much lately (and luckily my anger is a bit better).  But 3 minutes of punching that thing into oblivion is very, very helpful.  I meant to include a pic but I can't now.  I add pics all at once.  If I add one later it can delete my previous photos, which ticks me off.  So no pic of the heavy bag.  Sorry!

Luckily, my health has been cooperating!  At this time last year I had 35% lung capacity.  I have gained 6% in one year.  I'm now at 41%.  It's not much, but I can certainly tell the difference and I keep fighting to gain back more.  Is it possible?  I have no idea.  But I would love to continue to gain lung function and capacity as the years go by.

There is a girl who got a transplant a week or two before I did.  She's about 10 years younger than I am.  She went into rejection (from the flu, I believe) around the time I went into rejection.  She's now on the list for a retransplant.  I have such mixed emotions.  I'm angry that she has to struggle.  I'm ANGRY about rejection.  I'm angry that she has to be relisted.  However, I'm SO happy that she is eligible to be relisted!  I'm excited for her to hopefully try again and continue to get more years here on the big ball of Earth.

There is another woman who was transplanted one month after me.  She's also in rejection caused by acid reflux.  Don't get me started on that.  My anger overfloweth.  She hauls her oxygen tank to photopheresis and it makes me SO MAD.  This whole voodoo science of transplant is maddening.  I'm glad I have a punching bag for all of this anger.  I'm hoping the more I use it the less armpit fat I will have.  I promised Anne and Marty I'd do a post about armpit fat (that shit is depressing... and funny), but I'll wait til a later post.

At my last visit we reduced my prednisone to 7.5mg.  I've been asking to reduce my prednisone for so long that it doesn't even feel like a victory anymore.  But I'm grateful.  We also cut out one of my antiviral meds.  Cutting meds and reducing meds is awesome.  It gives my liver and kidneys a break, which means that my chances of long term survival are better.  My bone density is normal :-)  Considering my meds suck bone strength I'm pretty happy to avoid taking bone meds for another year (well, I take 1200 mg of Calcium a day).

We're coming up on November.  November makes me nervous.  Do any of you have a month that chills your blood more than any other?  Bad things happen in November.  I was dx with PH.  A year later I had the IV installed in my chest.  A year later my line was infected.  A year later I got pneumonia and had to be hospitalized. I think I managed 2 years with nothing too crazy (1 year pre and one year post transplant).  I got complacent and last year I slipped into depression.  November and I don't seem to get along too well.  I met a woman in Pensacola.  Her month was June.  She was dx with breast cancer in June.  A family member passed away in June.  The return of her breast cancer was in June again.  I do have some things planned for this November but I'll be treading cautiously...

So, in light of everything this year, Jeff and I made a crazy decision to travel somewhere exciting in October.  Somehow he convinced his CO to let him take 2 weeks of leave during FCT (Final Contract Trials) rehearsal time (and Jeff is the FCT coordinator, of course).  Why wouldn't Jeff, an aviator, be in charge of the most important inspection on the ship with all of its shippy parts?  That was sarcasm.  I got my flu shot, my TDAP shot and my pneumonia shot.  I'm as ready as I'll ever be :-)  That TDAP shot is NO joke.  My arm has a huge, sore bump (looks like I have a weird muscle growth) after 1 week.  I am slightly paranoid about jinxing our trip by even mentioning that we're going somewhere.  But I bought buttloads of trip insurance, so I have that going for me!

I've also discovered some amazing things like Stitch Fix.  Anyone else out there do it too?  You fill out a profile online (and a link to your Pinterest board) and your stylist sends you 5 items to try on (I picked every other month).  I got 3 tops, 1 pair of skinny jeans and a bracelet for my first month.  They all fit (even the freakin' jeans) and they are all cute.  You get 25% off if you buy all 5 items.  There's a $20 styling fee that gets applied to any item that you purchase.  Um.... it's kind of fun!  I'm excited to see what November brings.  Yes, I know Nordstrom has a free personal stylist, but I like that I don't have to talk to anyone with Stitch Fix and I am limited to 5 items.  You can also set a price range for items so shit doesn't get ridiculous and you can elect to avoid certain things (accessories, rings, etc).  Word.

I also finally broke down and got the Urban Decay Naked 2 palette.  I mistakenly got the Smashbox palette thinking it was what people were raving about.  It is not.  Like not even close.  Seriously.  So then I had to get the Urban Decay Vibe3 palette and the Ammo palette (to travel with of course).  I bought the UD Midnight Cowboy eyeshadow years ago, but it had so much chunky glitter fallout that I wasn't impressed.  But these palettes?  Holy crapembots.  Best eyeshadows I have EVER used.

I started using those crayon eyeshadows (pick a brand- I probably have it) because I'm so lazy.  But I can't go back to them now that I've used these Urban Decay palettes!  So... if you've considered them or don't have one you should BUY ONE.  It will likely change your life.  Okay, maybe not that drastic, but there is not a color in the Naked 2 palette that doesn't work for me (cooler shades than original Naked).

Smashbox on top, Naked 2 on bottom. heh heh... naked on bottom...

I know what you're thinking... those colors in the Smashbox palette are gorgeous!  They are... but they don't go on like UD shadows.  And too much chunky glitter in the Smashbox (upper row) makes them harder to apply.

Vibe3 on top, Ammo on right, Naked 2 on bottom

Hey... cut me some slack for being out of the makeup loop :-) I didn't give a flip about eyeshadow when I was dealing with PH.

Sorry dudes... got off on a makeup/ clothing tangent there.  Consider buying your wife or girlfriend a Naked palette (there are 3 large options and 2 small options) if she doesn't have one.



I've been super busy making quilts also.  I've made 3 in the past few months and am working on a fourth.  Don't worry... I will post more pics soon.  Here's a pic of the one I made Jeff for our Anniversary.

Oh!  I also discovered a new medical ID bracelet.  It looks like a silicone awareness bracelet, but it comes in sizes (I'm wearing XS) and has a QR code on the inside, along with an ID number and pin number (in case the QR code doesn't work).  The QR code can be scanned by any phone and your medical info pops up for any medical professional who needs to help you.  The QR code and other info is on the inside of the bracelet so people can't just scan and get your info as you walk by or something.  I loved my sterling bracelet but I couldn't fit enough info onto it.  This way my info is easily accessible and I can write that I have LINX and a repaired heart valve and all sorts of other important info that won't fit on an engraved bracelet.

I noticed that iOS 8 has a new medical info section.  I filled it out as well.  Can't hurt!  It can be accessed from your passcode screen by tapping Emergency and then Medical ID.


Phew!  That was all over the place!  But I've been feeling all over the place lately, so it fits.  Maybe my next post with have a coherent theme :-)