Conquering Grad School

The everyday insanity I encounter as a non-traditional graduate student

Living with Your Disease, Not Beating It!

June28

 

 

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.

Email will not be published

Website example

Your Comment:

 I LOVE my life! Yes, I wish it involved less pain and I’m working toward that, but I wouldn’t change anything about my life.  I have a wonderful husband, John Michael, of who I am incredibly proud. He works away from the home as an airline Captain and is gone about 60% of the week.  When he is home, though, we get 100% of him.  Without his love and support, there is no way I could have made it though the graduate program.


I am the proud mother of three beautiful daughters. My oldest daughter, Caitlin, is a college freshman.  It has been a truly honor watching her grow into a courageous, vibrant, confident young woman who knows what she wants and is actively working to achieve.  My middle daughter, Riley, is my “brain-child” who is always curious and quick to ask questions and work through answers.  She is also a wonderful artist who is  so at home in conversation with adults, we often forget she is just 11.  My baby girl, Rae, is my little cheerleader.  She is the giver of random hugs and the one who knows just what to do to push Riley’s buttons.  Rae is my free spirit, quick to champion the underdog and always ready to have fun. 


We have one other member of the family but I can’t really introduce him with out mentioning the family member we just lost.  My sweet Jenny was my constant companion for 13 years until she was called home in early March.  She was my angel; knowing before I did when I was either coming down with a cold or nearing a flare of pain.  She would herd me into my room at night if I was still up past 830pm and would stay by my side until the kids were in bed.  Once she didn’t have the need to “protect” me, she would finally relax and sleep.  Losing her was the single most gut-wrenching event I have encountered in years.  I felt I had lost my best friend.


The depression I experienced was so deep, I didn’t want to leave the house.  I was ready to leave graduate school and stay in my room.  Finally, with the help of my counselor, I realized I needed to try and fill the huge hole her death left  in my heart.  Enter Rue.  We found Rue at the same rescue shelter where we found Jenny 12 years before.  He was this big ball of happy that immediately won my heart.  He’s a little one (not even 18 months old) but being half Aussie Shepherd (as Jenny was) and half Great Pyrenees, he is not a small pooch.  I have begun working with him so he can help me officially as a service dog.  He has filled a very deep whole without replacing my Jenny.  Totally different but yet, a comfort that is so special.


Living with Lupus/Sjogren’s Syndrome/Rheumatoid Arthritis has changed my life in so many ways.  While its great to have a diagnosis, I am still wrapping my head around having a disease that will be with me for life.  I’m making life style changes that will hopefully help me in the long run.  And despite everything, I’m almost done with graduate school and I can’t wait. 


As I transition, so will this blog.  I’m going to try and share the challenges of the changes that I’m making and give a look inside the world of biomedical research.  I have tried for a several years (since I started) to blog once a week at least and I think now, I can finally get close to that.  I hope to also pass one useful information concerning the diseases and syndromes I’m battling and hopefully with all this together, I can help make the world a better place.


So I hope you enjoy this look into the ball of chaos that is my life! Hang on, it’s quite a ride!


May 2013
S M T W T F S
« Jan    
 1234
567891011
12131415161718
19202122232425
262728293031