Shine your light…

My cousin died this week at the age of 36 from a pulmonary embolism.  It was a shock.  It is painful. She was a ray of light and a good human being.  I did not know her well as a kid.  She was 10 years younger me and on the side of my family that I didn’t see often.  Erin “Fluff” and I reconnected on Facebook in 2009.  She was funny, opinionated, a huge Philadelphia sports fan.  I liked her a lot.  In 2010, my 34 year old cousin died of leukemia/lymphoma.  Erin reached out to share stories of Chris (they were not cousins and I didn’t know they knew each other).  She was a support I didn’t expect, but one I grew to rely on.  After that, I interacted with Erin in person or via Facebook,  just about every day until she died last week.

I laughed at her posts, encouraged her when she was down, and commiserated our love of Philadelphia teams that just suck.  She did the same for me.  Erin was a force of nature, a personality as bright as the sun, and a heart that was bigger than life.  Her life ending is a loss for many.  She had over 2,000 Facebook friends and I think just about everyone showed up at her wake.  An appropriate tribute to a great woman.

I live with multiple autoimmune diseases and it causes me be cranky from the pain and fatigue.  I often kick myself for letting life pass me by at times.  Honestly, I feel better than I have in years on my current medication cocktail.  I’m just stuck in my ways.  It’s time to shake things up.  It’s time to live life to the fullest.  You never know how much time you will be granted on Earth.  You might as well make the most of it.

This weekend was one of Erin’s favorite times of year. St. Patrick’s Day.  So this weekend, “Shine your light while you got one”.  Make a toast to “Fluff” and live life thoughtfully.  Rest in Peace Fluff.  I will miss your light.  Until we meet again my friend.  #TeamFluff

An Irish Blessing:

An Old Irish Blessing
May the road rise up to meet you.
May the wind always be at your back.
May the sun shine warm upon your face,
and rains fall soft upon your fields.
And until we meet again,
May God hold you in the palm of His hand.

Here I go again…

I have taken a 2 year hiatus from blogging.  Not that I was ever overly proficient but the last two years of my life have held many highs and lows.  When I last posted, I was beginning a new biologic.  It was a miracle.  I saw my ankle for the first time in 7 or 8 years!  I was elated.  Then I found out I had issues with my blood pressure.  Turns out either the disease or the medication I take for my autoimmune arthritis caused damage to my left renal artery and my heart.  I started back on the biologic when all was under control again.  I was so excited then BAM….anaphylactic shock.  Yep.  Failed again.  I knew it was a possibility but had no clue it would hit that hard.  Thank goodness my rheumy rescued me quickly.  I soon started another biologic and it’s been a mini-miracle.  I felt better than I had in years after about 6 months on the drug.  Then BAM!  Broke my leg and BAM again….so did my dog (just my luck).  To top it all off, days before the cat was diagnosed with Inflammatory Bowel Disease (just my luck) and she needed treatment.  My life quickly went from “starting to be good again” to FML very quickly.  I have to admit.  Fighting to get through each day was exhausting.  I wasn’t supposed to go back to work, but now had a $4000 veterinary bill to pay for both pets, in addition to my own bills.  I needed a plan.

My greatest issue living with various autoimmune diseases has always been asking for help when I needed it.  I suck at it.  Truly.  I fight hard to maintain independence. The reality of how isolated I made myself hit me full force while waiting for my surgery and I was alone.  Waking up from surgery, again alone.  It was my choice.  I didn’t want to bother anyone…but it broke my heart.  Having a broken leg, I had no choice.  I moved in with my parents for 2 weeks.  Had to ask my cousins to transport me b/c I wasn’t yet allowed to drive.  My dog also needed surgery and then needed to stay with my parents for over 3 months b/c I couldn’t care for her and myself alone.  Other cousins got me a loaner wheelchair.  My best friend did my laundry and took me to doctor appointments.  My bosses and coworkers pushed my wheelchair to and from my car in crazy winter weather.  Random coworkers and students would see me wheeling out of my office and would help me outside.  Many coworkers made, bought, and/or cooked my lunches.  My neighbors were my left and right hand for months.  I learned to ask for help b/c I had no choice.  I learned what phenomenal people my friends, family, and coworkers are.  I did hear one person who helped early on referred to me later as a PITA.  I now know to never ask that person for help again.  My original response was to think everyone felt that way.  I know that is not true. I’m far from good at it, but I still ask for help when I need it.

Six months of physical therapy took me from a wheel chair, to crutches to a walking with a cane, to walking solo.  Seems that the repair to my ankle helped my RA.  I think all the damage I had from RA was repaired when the bones were put back together.  My ankle still aches but not in anyway like it used to.  Seems my RA migrated from my ankles to my hands.  That’s an autoimmune disease for you.  Unpredictable.  The dog is healed, the cat doesn’t puke as much as she did.  My family is doing well.

I feel like I am at a place where I have something to say again.  Might just be musings of a crazy gal with RA, but if I can connect with someone who might be in a low place and realizes they aren’t alone…..I’d be happy.   So here come my musings…

Flashback.  Seems both Georgia (dog) and Lola (cat) enjoyed sleeping on the broken leg.  In their world, I’m furniture….and I’m okay with that.