June 28, 2012

Living with Your Disease, Not Beating It!



I finally came to some sort of peace with everything I’ve been dealing with.  It took a while.  In June, I had a few days early in the month where I had complete peace around me.  Mike was at work and Riley and Rae were in Branson with my in-laws.  It was just me and the dog.  It’s really hard to NOT deal with stuff when you have no real distractions.  I finally had the peace and quiet I needed to absorp what is becoming my new version of normal.  As a former sun worshipper, I can still get in the sun occassionally but not without my trusty SPF 100 sun screen.  I’m also getting used to being outside in floppy hats and long sleeved shirts. If I don’t protect myself, I pay for it.  My skin actually burns as if I’ve gotten cayenne pepper under my skin. I still love to be outside, I just have new requirements.

My energy level is probably my most problematic parameter. I have had to accept that when I wake in the morning and don’t have the energy to get dressed, forcing it and going into work is NOT a good idea.  Mistakes get made, it costs the lab money since the experiments most be done again and most importantly, it frustrates me to no end.   I’m still learning where my limits are and it’s difficult because those limits change depending on many things; weather (temp, humidity), how much walking is needed on a specific day, and which problem is acting up.  Is it my neck?  Is it the lupus (skin, fatigue)? Is it my hips (spondylitis)?  Every morning I’m taking an inventory of what works and what doesn’t and adjust my day accordingly.

Some around me thing I should just power through.  Keep on going! No giving up! They believe that if I keep fighting it, I will “beat” it.  What I need for them to understand is that you can NEVER beat diseases like lupus and Sjogren’s.  You will not win.   All you can do is adapt.  So many self help books have titles like “Beat Lupus NOW”.  I hate those titles.  What they really do is give advice about how to adjust and adapt in order to live your life to the fullest within the boundaries you disease presents.  The “Beating” comes in not letting the disease cause depression or isolation.  The problem with “powering through” is…….IT DOESN’T WORK.  It’s no more than being in denial.  The times I’ve seriously tried to keep going, I’ve ended up being shut down because my body just gave out.  I would get sick and be out for days.

Mostly it boils down to your EGO.  Getting over myself was the biggest part of those days alone.  We are our own worst enemies.  I kept telling myself that there was no difference between  things now and things ten years ago.  I didn’t want to admit that I needed more time off than others or that I needed help.  I HATED asking for help.  Gradually, I’ve learned that its much better to ask for help the first time than to do it myself and screw it up later.  The worst part is being patient with those you require help from.  Occassionally you have to wait for help and I HATED waiting too.  I’ve learned to be much more patient with everyone.

As far as grad school goes……..

Coming back to the lab after a semester off for two major back surgeries was interesting to say the least.  In all honesty, I probably came back a couple of months too early.  But in March, I finally started hitting my stride and things have improved since then.  I had a committee meeting on June 18, which went very well.  However, only two of my committee members were present.  The other two should be back in July and I’ll meet with them privately.  Everything  seems to be lining up.  I have three more experiments, each about a week total for replicates (must always have three or an n=5ish). I have sort of given up being done by August 1st.  It would have been tight if I could have done it and health wise, it wouldn’t have been good.  But all in all, I smell no petroleum products with that emerging and brightening light so it’s looking like a true tunnel termination.


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