Monday, August 27, 2012

Recovery on a down slope

Recovering from surgery has its ups and downs.  I mentioned earlier that I've been in a slump or as my mom would like to say, "Pip squeak, you are depressed. Baby girl, this isn't like you."  I don't disagree but I don't want to admit that I'm depressed at the same time.

I've been depressed largely due to my activity level and how sluggish my right side is healing.  Sure, I was "active" before my surgery, I tried to keep myself busy.  I would attempt working out so it would make sense why chilling extra hard all summer would be difficult.  The not lifting more than 5 pounds in theory doesn't seem that hard but in practice might as well be climbing Everest or solving the nations economic crisis.  I hate asking people for help because I think I am putting them out and it is embarrassing.  I'm 23 not  83!! It is the simple things too, taking out the trash, cleaning my home, sleeping on my stomach, getting off the floor without using your upper body.  It is extremely difficult to adjust automatically to a new life or a new way to do things while you are recovering.  You have to consciously think of every moment, every activity, and every breath for that matter.  Everything you do becomes an Olympic endurance event; it is planned, calculated, practiced, rethought, performed, analyzed, and readjusted. 

I know healing takes time and is a very complex process, I get that.  What I don't understand is how to tell myself: things will be okay, your body heals at different rates, don't give up.  It is so much easier to tell that to a client than be the client.  Furthermore, I tried to convince myself before the surgery that it really wasn't that big of a deal, routine surgery - it's not.  It is a very invasive, intense surgery that required me to spend 7 full days in the hospital.  I've had 3 chest x-rays, a CT scan, EKG, and lots of blood tests all because my lungs weren't quite up to par and they were afraid I had collapsed them or had a blood clot.     

The main source of my depression, no bull shit, straight up - I don't recognize the girl in the mirror anymore, I simply have a loss of self identity.  The thing about my TOS is I've had it my entire life and didn't realize that kids my age didn't experience the things that I did every day.  My entire life, I have been in pain.  I didn't talk about it, I didn't WANT to talk about it.  I'm still young, still trying to figure out the world, who I am, and how I fit into the world.  Several people have told me that it is no different than cancer survivors or other people who have had massive surgery but I disagree.  I disagree based on the fact I've had this my entire life, I fully accept the fact that I may not have known I had TOS my entire life but I have felt like a mystery science project - different.  Other people may not identify me as the girl with medical issues but before being a dancer, student, science nerd, I was a kid in pain.

Unlike other diseases or disorders you remember a time before the diagnosis - I don't.  I don't know or remember a time before the pain, before accepting the role of a science project.  I don't know how to be a normal functioning person!  I don't know what to say when people ask me about it.  Do I say, I had TOS or make a joke out of it saying my parents loved me so much they gave me extra bones and got them removed because they gave me a run for my money.  Or is it one of those cases where you will always have reminders of your journey but you reached the destination and it is over leaving you to the next adventure?

I'm lost, have been lost for awhile now.  I can't say that I am out of my slump as I write this rant but I will say this.  Recent comments from people with TOS discovering my blog has helped rise me up a bit, I never thought other people with TOS would find my journey helpful or comforting knowing they weren't alone....It made me realize that I am not completely alone which at the end of the day is nice.


My escape

Throughout my blogging experience I've noticed that when things get really busy or when I'm in a slump talking about my feelings in the moment is the last thing I want to do.  Granted, this fact is true about hmm 85% of my life...healthy I know!  With that being said I am not surprised that the next few rants and raves will be on the more somber side. 

I knew I would become depressed during my recovery process; in my opinion, I consider it very normal and would be concerned had it not happened.  Although I expected the slump, I didn't expect that everything would come to a head all at the same time.  From family bummers, relationship doubts, loss of identity, general struggles, and the big financial worry big restriction of activity financial worries  = I needed an escape.

I escaped to Wyoming and it may have been the best thing I have ever done.  Did I run away?  You bet your ass I did.  I went home with my best friend to visit his family in the small town of Green River.  It was just what I needed; the 2 friends I went with never judge, understand where I am coming from yet challenge me to better myself, aaannd give me that swift kick in the butt to move on from things.  They are part of my family whether they like it or not. 

I think the best thing about my escape was the fact the quiet surroundings reminded me of home, something that I desperately needed in this recovery slump.  I needed to be around people that I didn't need to wear a mask around.  (My boyfriend would be annoyed that I'm quoting Batman but...) Honestly, there are people that I feel I need to protect from my life or my emotions so I wear a happy go lucky mask and pretend as if I'm not in pain or can't get out of my own anxiety state.  I'm sure I put on a happy face for my benefit as well, the old wife's tale, "if you smile or think positive, things will be better and good" I don't want people  my parents feeling responsible for my TOS, granted it is their genetics but it's not their fault and I don't want to send my friends into a depressed state because they don't know how to handle or help with my recovery process. 

In Wyoming, it was the typical going home trip.  There were massive amounts of love, warmth, a few decent amount of tears, alcohol consumption...times 5, a fully stocked fridge, deck chilling, hot tubing, and dancing. 

I was reminded that, I needed to worry about myself and focus less on how my friends and family were coping with my recovery.  I focused on how I felt about my recovery, reasons why I was in my slump, and reflected on how my life was starting over in a way and what I wanted to do with it. 

Thursday, August 16, 2012

My Deepest Fear

Fact: I haven't felt like myself in a very long time.  Maybe it is due to the slump of recovery or being in a state of limbo or trying to be everything for everyone or all of life stresses hitting me at the same time.  Whatever it is my anxiety about my life was somehow decreased when my friend sent me this quote.

What do I fear?
I fear stagnation and lack of progress. I fear never reaching my potential and being average.
I fear being forgotten...The past...Yesterdays' news.  I fear giving up and being passed by, going softly into that good night.  I fear letting those that I love down, letting myself down
I fear settling, giving in to the "that's just the way it is: mindset.  I fear dying without leaving my mark.  I fear not feeling these fears anymore and just floating along. 
These fears feed me, they nourish my drive.
I love my fear. 

I love this quote because these are the fears that no one talks about.  Sure, you think about them when you are falling asleep but do you tell them to someone or better yet - do you admit to yourself?  Chances are you don't.  I didn't tell others (until now) these are my deepest fears.  I have always feared not being enough, doing enough, and dying without making a difference to those around me. 

Fear is scary, can be silly, but fear drives you to a place you've never been before, challenges you, and forces to look at yourself in a different light.  I hope I don't lose my sense of drive and fear because I'm not sure what kind of person I'd be without it...

Wednesday, August 8, 2012

Extra help to get me through the day

I've had a couple good days with a few not so great days in my recovery process lately when that happens I never quite know how to react.  Be upset? Frustrated? Accepting?  I mean I knew this would happen but I guess I am still struggling with the reality of how major of a procedure I had and how it will significantly change my life. 

On days like this Most days, I look at quotes trying to find encouragement and I keep coming back to a few.  The most frequent is on a magnet my grandmother gave me a few weeks before she passed away.  I can't help to think that she meant every word on that magnet knowing that my road in life would be the less traveled, the one under construction, and that I in my own self destruction, tunnel vision manner would need the extra kick in the butt on trying days. 

Although it is just a silly magnet, it helps get me through the cloudy days.

This is my wish for you: comfort on difficult days, smiles when sadness intrudes,
rainbows to follow the clouds, laughter to kiss your lips, sunsets to
warm your heart, hugs when spirits sad, beauty for your eyes to see, friendships
to brighten your being, faith so that you can believe, confidence for
when you doubt, courage to know yourself, patience to accept the truth,
love to complete your life. 

- anonymous

Tuesday, August 7, 2012

Just Plain Jane Christine?

normal:- adj

usual; regular; common; typical

For most of my life I have always wanted to be normal.  I didn't want to be the only divorced kid in a small community; I didn't want to be the chubby tall girl; I didn't want to be in special education classes (what up title 2 reading and math...cue 'look at me now' music); I didn't want to be seen in any way, shape or form as being different.  Most recently, I didn't want to be the 23 year old medical science project anymore.

Growing up I didn't  understand that being normal was:

  1.  boring
  2.  didn't make those college essays jump off the page
  3.  a pretty vague definition
  4.  was not exactly in my future
  5. overrated

The older I got the more I became to realize even though I looked like others my age - I physically felt different.  I felt caged in unable to live my life - my heart weighed down with pain and sadness despite my upbeat manner.  It secretly influenced my life for years only to later control my day to day scenes.

It has been 5 weeks since I left the hospital after my surgeries, a very long and trying 5 weeks but I got through them.  I got passed collapsed lung scares, fluid filled lung scares, blood clot scares, physical therapy downers, and post op pain, numbness, low energy and less than positive demeanor.  Lets not get things twisted, I still struggle with down days, pain, being tired easily, having trouble breathing, and can't really use my arms to lift anything, but for the first time yesterday I felt normal

Yesterday was the first time I decided to french braid my hair all fancy like.  As far as I can remember, it was the first time ever my hands didn't go numb, tingle, get heavy, turn ghost white, or become cold.  I know it doesn't sound like much, but that dose of normalcy is exactly what I needed to refocus my heart and brain back into believing that being my broken self was okay. 

This past 5 weeks, I think I finally learned that being 'normal' doesn't truly exist given the basic definition.  Being normal is what you do daily to thrive in your environment given your own personal and unique situation.

My surgical scars help remind me that my journey in life is not typical or common but is my normal, my unparalleled experience.