New Normals

"We're high then we're low, first it's yes then it's no, and we're changing like the tides

Yeah, but I want you, I need you, and I guarantee you we'll make it out alive"

Battleships.

Friday was a great day, I finished a 3 week course of IV therapy...3 long weeks of being poked, prodded and infused.  It's been a bit of a rough month or so.  I've required oral antibiotics and LOTS of prednisone to just "get by".  When I didn't respond to a week of 60mg's of prednisone orally and my doctor heard how terrible my lungs sounded, the decision was made to start IV antibiotics.  In addition to the IV antibiotics, I was given 3 days worth of IV Solumedrol (prednisone).  At that point my lungs were screaming, hurting and it wore me out, broke me down to the point I couldn't go another day feeling like I felt.  Just showering completely wiped me out.  I was ready to start feeling like "myself" again.  

A little bruised after multiple
attempts at an IV.  One
day it took 7 tries.

This new "self" however, has changed over time.  In years past, I would bounce back after a course of IV's really quickly and feel fantastic for a longer period of time.  The change would be so dramatic from feeling really bad to feeling like a completely new person.  This isn't to say that the change isn't quite as drastic now b/c I definitely feel better, but my baseline "self" is much different, a new normal.  I just don't feel as good on my good days as I used to.  I have to remind myself that the rebound will take more time and I will still have "bad days" despite just getting done with treatment, it's just the nature of the beast.   Adapting to these "new norms" has proven to be a little challenging on my end both physically and emotionally.  I get impatient and often the things I want to do are the hardest.  Take the gym for instance ... since I haven't been able to work out like "normal" in the past (few months) really, I've lost some weight, and definitely lost strength and muscle mass.  Getting back to the gym has proven to be very tough, and I have to keep reminding myself to take it slow.  I want to get on that elliptical or rower and pound out 30 mins, but reality is 10 mins in, I am exhausted ... so I push a little and compromise, and do 20 mins instead of 30mins.  Where I used to lift 20lb weights, 10 lb weights have replaced them ... and I am so sore!!  And, all of this is usually done wearing oxygen at the gym....yes, in a room filled with gym rats and testosterone overloaded meat-heads, I walk in with my oxygen tank, oh so fancy.  All of this is to say, that these are the little "new norms" I must get used to but also challenge myself to become okay with yet strive to keep getting stronger at.  I know I won't be running 7 miles like I did in college, but I do know that I can build back some muscle strength and my endurance to a point where I feel (and look) stronger, healthier. 

This was a last minute "make-shift" IV pole I had to do to "flush" my kidneys.  I had some elevated labs that caused some concern, so I had to stop IV antibiotics on what would have been my last day and take in 2 Liters of fluids.  All is good now!

As I look forward, the scariest part is this knowledge that things will get increasingly tougher.  What I think is tough to do today, will be even harder down the road ... and that is incredibly frightening.  To see and feel the physical, mental and emotional changes that come with a chronic debilitating illness like PCD, is tough to say the least.  Navigating through the emotions of being "the sick child, the sick wife, the sick nurse, the sick neighbor, the sick friend" ... proves to be something I still haven't fully grasped or come to proper terms with.  Obviously, I know I am more to people than that ... but I am not the best at accepting help or acknowledging that I need help at times.  I've always tried to remain as independent as I can, but this independence has slowly morphed into something I am still not always comfortable with ... me needing someone there to do things for me.  I am so incredibly lucky to have people around me that know me, and instead of me having to ask, they will just do.  I couldn't have made it as "gracefully" as I did the past few weeks without the help of my Mom and my husband.  From cooking and cleaning to walking the dogs, to just being there for me on an emotional basis, these two are incredible rocks in my life.

As are all of you who called, texted, emailed and facebook me...it really means so much to know true friends are out there, and I must say you really learn who those true friends are in times like these.  In a way, having these "issues" has enabled a filter in my life I never once had ... for those people and things that matter, those that care ... and then those who just "fall away".  We've been lucky enough to have some pretty awesome people step up ... and I've also been "let down" by some who I thought were friends, but when the going gets tough they aren't anywhere to be found.  This is all part of life however, and I am focused on what matters most ... my family, my health, our friends and this life I have to live. 

After this rough month, I decided I needed a change and I
chopped 6 inches off my hair!!
I LOVE it and it feels so refreshing.  All part of this "new normal" :) 

So now, the fun part beings as I head back to work tomorrow for the first time in 3 weeks (yikes)... and even better yet, we prepare for a trip to Hawaii in a few weeks!!  Getting back to the routine, all while doing with with these "new-normals" in place.  So what if I have to be that young girl with oxygen at the gym, or on the plane, or I have a puffy face from all the roids ... I am not going to let it stop me from being who I am, or getting in the way of what I want to do while I still can.  I've learned  that often times the biggest hurdle is my own self, mentally accepting these changes I never asked for, but I know I need to deal with ... and slowly but surely I am accepting this new Rebs.  And speaking of changes .... I was ready for a change in the hair, check it out!! 

Pose 2 ... another look at the new hair!