Tuesday, January 17, 2012

Real Talk

Don't ever tell a kid they aren't sick when they really are.  Don't ever try to convince them that what's really wrong with them is only in their head when they are genuinely suffering.

I say that because I know what happens to kids that go through that-- they end up like me.  And I am a hot mess when it comes to listening to my body signals.

My house was not always the easiest house to grow up in.  Things were pretty spectacular until I was about 9, and let's just say that's when ish got real.  There were drugs, and fights, divorces, lots of men coming in and out of my life, alcohol, jail.  My brother moved out. I was thrown out of the house a few times.  I thought of running away other times.  I stayed with friends and I lived with my grandparents off and on.  There was almost no stability and very little attention being paid to the kids.  The parents were having a hard enough time surviving and taking care of themselves.  And so I learned to be as little a burden as possible.  Never complain; try to stay invisible.  That meant survival.

Fast forward to yesterday (Monday) night. I'm in the middle of making stuffed cabbage casserole, and I feel a twinge in my back.  Hmm, I think. It's probably nothing.

And that's how it works with me.  My first instinct is always "it's probably nothing." I think it's served me well all these years, and I think that positive thinking is a powerful thing.  But post-cancer, in my "new normal," it's just a dusty old habit.  I can't think of any way that it's helping me.  The 48 hours following that twinge I've spent in bed, trying not to move to avoid back pain.

Not that my pain can be predicted-- or sometimes even prevented.  I'll be fine, then within an hour, my leg will be swollen, I start to have pains all through my abdomen, and I'll start to get shooting pain up my back for no apparent reason.  This may last a couple hours, or it might last days.  Then, just as quickly as it came on, it's gone.  Bizarre.

Sometimes, in the midst of pain like this, I give up hope.  I start to believe that there's no use trying to pretend that I'm normal and I can lead a normal life.   I think about quitting my job.  The truth is I let down my coworkers with what has practically become a monthly routine of staying home a few days with pain.  I tell myself to just push through, go to work.... and I'll be fine. I'll probably feel better the more I move around, my head says.  But that is hardly ever the case anymore, and I need to face that reality.  I'm anemic.  My memory suffers.  I have gone from being the top of my class in college to the girl with brain fog that can't remember basic vocabulary.  I'm a mess.  I'll wake up with the same migraine for eight days in a row. My joints and legs hurt, my foot goes numb and I trip over stuff like I'm drunk.  I feel narcoleptic in the afternoon. I'm sometimes exhausted for the whole week.  I ache all over- my shoulders, my neck, my face, everywhere.  My sciatic nerve in my leg sometimes burns from my heel to my back. My pelvic and abdominal pain make sitting painful, and I have shooting pain up my back when I try to bend over.  Am I even capable of having a normal job?  Will all this end with the hysterectomy?  Please say this will end.

I don't even know what the reality is.  What do I change when it's not even something I did?  It's hard not to blame myself when it appears out of no where.  I sometimes think I should go easy and save myself the misery of the pain later, but even resting a lot does little to prevent it.  So I think I should just get as much life as I can out of my good days, because who knows how many of them I will have?  Last week I was definitely tired, with just the regular lymphedema and nerve pain, but nothing I couldn't handle.  I forced myself through the fatigue.  I would take a few sips of Red Bull when I needed to and I made it to every workout.  I worked out 5 days last week!  And I felt amazing. I was even taking it slow, just walking on the treadmill or going easy on the elliptical. I was cooking, eating healthy food, hydrating like there's no tomorrow.  My libido was in full swing.  I was enjoying my workdays.   I had dinner with friends on Friday and even went out and enjoyed myself Saturday night.  It was like I was my old self again.  It felt so good to have it all together.   A normal life with a normal body.

And now this- in bed for two and a half days with back pain that shows up like unwanted in-laws.  These setbacks are never easy, no matter how many times you have them.  Read any cancer survivor's blog and you'll watch them, over and over, take a few steps forward then get shoved all that way back.  Its just how it works.  Tenacity is the key I guess.  I know all the statistics about how likely this is for me to be going through-- I know about interferon and the thyroid, about chronic fatigue and interferon, about autoimmune disease and the thyroid, about melanoma and the thyroid.  Only maybe 2 or 3 really close friends even know about this stuff, so it's difficult to explain missing work, missing concerts and events, being too tired to do anything.  I'm really sick of having to make excuses or explain.  It's embarrassing and awkward, especially since I have kept so much of this under wraps.   I seem like a total flake.  And dear God, it's been this way for years.

Ugh.  I think I'm just ranting now.  Sorry for the downer of a post.  Things will get better, be brighter.  I am going to hang in there and focus on the blessings--the people that love me, my friends and my family and my students.  I am overwhelming blessed daily by all of them.  And, year after year, things do get better with my body.  I will admit that.

I'm just going to let go and accept that this is the life I'm meant to live.  Thank you, Universe/God, for this life.  Eventually I hope to understand how it is perfect for me.

Lots of love,

p.s.- Please keep my peeps in your prayers, as they are going through lots of medical procedures right now.  Thanks!


Bob B. said...

You've come so far. A little backsliding is permitted :-) All my best wishes for the medicine that is yet to come and for your peeps. Hang in there.

Joy said...

I'm so sorry that you're going through all this pain. I love you, and I'm amazed at your strength and positivity through all the crap. You're an awesome person and I feel so blessed to know you. <3

Anonymous said...

A friend of mine directed me towards your site. Just wanted to say hello and that I respect you very much for being able to write like this for other people to read through and try to understand. Sending you lots of love. All my best wishes to you. Cath (UK)


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