Times like these….

I love music.  I love concerts.  The more my disability progresses, the harder it is for me to attend concerts.  See I’m one of those people in the middle.  I definitely struggle with mobility, but I’m not truly in need of a wheelchair.  I’m a “need-a-cane-some-of-the-time” kind of person.  Concerts tend to be in big venues, which means a lot of walking AND possibly standing.  Now as a lover of music, I don’t mind…..but as a person who can’t walk easily, it’s hard.  Some people I know have stopped going to shows because of their physical limitations.  I refuse to do that because I love the whole concert experience.

Last night, I saw the Foo Fighters for the 4th time.  They are my favorite band and I try to make a point to see them when they are in town.  They typically play at the BB&T arena in Camden, NJ.  This arena has an amazing lawn area in which you can see the stage in the covered pavilion in front of you, and the gorgeous Waterfront view of Philadelphia to the West.

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Photo credit: Flocku.com

It’s a stunning place to see a show…..unless you are differently abled or fall into that in-between category like I do.  Why?  Well, for one, parking.  I arrived in Camden at 7:30.  A little late because Georgia needed her insulin at 6:30.  I live 45 minutes away from the arena, so I actually made good time.  Parking is pretty much directed by police.  I was directed to a lot 1 mile away from the venue.  I asked for handicapped parking multiple times and was directed by cops that I had to keep going away from the venue.  Once I got to a lot, I asked again for handicapped parking and was told “Because we are so far away, there is no handicapped parking”.  Uh, what???  (Did I mention it was $30 to park, too??) It took me about 20 minutes to walk the 1 full mile to the venue gate.  According to their website, they have 90 handicapped parking spots. Honestly, knowing I was a bit late, I was fine with not getting one, but had hoped I could at least get closer than a mile away.  Then I had to stand and wait another 30 minutes to clear security.  Once inside, I hiked up the hill to find my friends.  It was about 8:30 by this time and my ankles, knees and hips were on fire.  It didn’t matter though, because the Foo Fighters were on stage and the music makes everything better. I was proud of myself for being able to walk so far!

This “better” feeling was short lived.  After an hour of standing on the hill, I was starting to struggle.  I was torn between leaving my spot to go sit for a while (and not be able to see/hear the concert) or sucking it up longer.  At one point, I thought about going up to the retaining wall and leaning against it but there was no room. Luckily for me, a couple in front of us suddenly got up and left.  Prior to leaving, they told my friend that they were leaving their chairs and asked if we wanted them.  A MIRACLE!!!  Seriously,  at this point, I was close to tears from pain and trying so hard not to let it show.  I’m sorry the people in front of us weren’t having a good date…..but in a way, I’m not!  Their lousy date resulted in me getting a seat!!  Low to the ground and I couldn’t see the stage, but seats regardless, a seat is a seat when you need it.  My aching hips, knees, and ankles rejoiced as I sat there and decompressed (literally!).  You know that feeling when you are in so much pain, and you get that brief reprieve?  It was heaven.  I turned to my friend and admitted I didn’t know how much longer I would have lasted without sitting down.  My love of the Foo Fighters and being determined to not let my disease ruin my night kept me going but it was so tough.  Pain definitely clouded my whole experience.  It was great, but I couldn’t stop focusing on how much pain I was in and how hard the next day was going to be.

Now I am the type of person who uses the handicap spots only when I need it.  I use it at work and grocery shopping.  If I feel good, I tend to not use them at all so someone else has it available.  I know people abuse handicap parking, but I am not one of them.  I use it to decrease or compensate for the amount of pain that I know will accompany and daily living task like grocery shopping and walking the long halls at work.  I’ve become so accustomed to pain over the years that when I experience no pain, it’s almost a shock to my system.  Some would say the fact that I was able to walk to two miles to and from the venue means I don’t need special parking.  They would be wrong.   Imagine standing on a bad sprain, in both ankles and knees, in addition to back and hip pain.  That is how I felt throughout the concert.  Since I paid a lot for tickets and I love the band I sucked it up but worried about getting back to my car.  Thankfully, I had people with me.

The other day, I was running errands and I came across this sign in a chiropractor’s office:  img_8983-1

A nice sentiment but for people like me, who live with a chronic pain disease without a cure, it’s kind of unrealistic.  Pain is not my lifestyle “choice”, but it impacts my lifestyle choices.  So although I like the sentiment of this sign, I have to say it’s aggravating  because when a disease takes over your life and impacts the way your joints move, pain is a reality.  Going to a chiropractor may help a bit but after 19 years of living with multiple autoimmune diseases that cause pain, I’m highly doubtful that anything is going to eliminate my pain altogether.  (Trust me, I’ve tried everything under the sun!!)  So basically, I feel like the sign is telling me I’m making a choice to live in pain, when in reality, I have no choice but to live in pain.

My neighbors were hanging out last night when I got home.  They thought I was drunk because of the way I was walking.  Nope, just in pain.  Today has been rough too.  All the projects I had planned for today are pretty much not happening or are happening at a super slow pace.  I had to break down and take a pain pill.  It’s the only way I can make it up and down the steps to use the bathroom.  All of this because I wanted to enjoy my favorite band live.

Now I will never regret going to a Foo Fighter’s concert, I just wish the venue offered better options for parking.  All of my requests for handicapped accessible parking were ignored, like I was invisible.  Just like my illness.  Ironic, right?  I guess in times like these, I have to expect to be in pain because there are no other options when my “lifestyle” includes going to concerts.

Foo fighters
Thanks Foo Fighters for the great show!

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

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