Fighting mad

Time.  You always think you have plenty of it but when you live with autoimmune arthritis, time is not your friend.  In order to make it to work in the morning, I have to set my clock an hour before I need to get up.  Why? Because it takes me at least an hour to stand up some days.  Not everyday, but since I’m not a psychic and can’t always tell when it will happen, so I need to lose an hour of sleep every day.  I also usually need an hour or two to fall asleep due to pain at night and I wake up anytime I roll over because it hurts.  Sleep is not my friend.

The work week.  I always think I have plenty of time to get things done.  I don’t.  Typing takes a lot out on my hands.  I have to rest my fingers and even ice my hands to be able to write reports and progress notes.  I don’t stay long after work because by the end of the day, my fatigue is raging.  Walking the long hallways to get to meetings, climbing stairs….it’s exhausting.  I’ve found myself having a hard time keeping my eyes open on the drive home.  Recently, I practically fall in to bed when I get home.  Half the time, I can’t sleep but at least I am able to rest.

The weekend.  People will ask me to meet up on a Friday night or go to Happy Hour.  I’d love to…but I’m often just too tired.  The thought of sitting in a hard chair or barstool makes me want to cringe because my back aches or my fatigue is raging.  Do I want to go?  Yes.  I always have to judge how much energy I have to get through another few hours of remaining upright.

If I do have things to do on the weekend, it makes the following work week a raging hell because I never got the rest I needed to recoup from the previous week.  I had to cancel my weekend plans this weekend because my back hurt too much for a 10 hour round-trip drive.

It’s an never ending cycle.  It’s depressing.  My normal is exhausting, depressing, and painful.

I don’t like posting really negative things about my illness.  I try to always keep the perspective that things could be much worse.  This week, I was told I have Inflammatory Polyarticular Spondlyoarthropathy Not Otherwise Specified.  This is  my 4th diagnosis in 14 years.  I’ve been told I have Fibromyalgia, Sjogren’s Syndrome, RA, and now Spondyloarthropathy (oh and let’s not forget the doctor who told me nothing was wrong with me at all).  This is why I stick with the label autoimmune arthritis.  I have autoimmune diseases that attack my body causing severe joint inflammation and arthritis.  Another diagnosis will not change much in my life.  It might eventually lead to another medication change.  I don’t know why it is bothering me so much because I know this happens a lot to people living with autoimmune arthritis.  Today, I just don’t want to be strong and look for the bright side.  Today, I am mad.  I want the pain to go away.  I want to have time on my side and be able to garden, vacuum, and clean my bathtub.  I want to be healthy again.

I don’t often write posts like this.  When I do, kind people often try to help me by offering cures.  Have you gone gluten-free?  Do you do acupuncture?  Do you want to try my health shakes?  Do you use essential oils?  Deep down, I appreciate their thoughts, but I’ve tried them all and have written about how they all failed to help me (Check out the “F” Word).  As my friend Tiffany Westrich says, my disease is genetic & environmental.  A change in diet will obviously help me feel better, but it won’t slow the progression of my disease.  Oils and shakes are great….but being sick is expensive.  I just don’t have the money to try more stuff.  I appreciate the offers but it’s getting harder and harder to say, “No thank you.”

I will start physical therapy again and hope that helps the pain I’m experiencing in my back.  I will try to rest and get through my work week.  I will try to get a positive attitude.  Maybe I will or maybe I won’t.  I’m determined to live life well with autoimmune arthritis. This weekend my disease won….I’m down but not out.  I’m coming back fighting…

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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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