RA Blog Week 2018: The good, the bad, and the ugly…

I am proud to participate in the 4th annual RA Blog Week.  Thanks to Rick Phillips for organizing this event every year.

Day 1 Prompt: The Medicine – Patients with autoimmune disease often are not treated well by Doctors and Pharmacists when we ask for or receive prescription RAblog_week_RABADGE2018(2)pain medicine.  What has been your experience?   Share the good, bad and ugly side of your experience.

I haven’t had major issues with getting my pain medication filled until recently. I’ve submitted for a refill of my tramadol 3 times only for it to be wiped away.  On Friday, I asked CVS to clarify and they said my rheumatologist office must be doing it. I’m not so certain but couldn’t reach out to them because it was after hours. I’ve been taking tramadol for almost 15 years. I used to take it 3x a day religiously. When biologic drugs entered my life, I started taking it only 2x a day.  On bad days, I do take it 3x because I need it to get by especially if I am working.  When the opioid crisis came about, I was shocked to learn that people were using tramadol to get high. I had no idea. Maybe that is naive on my part, but abusing it would never have crossed my mind. I do not take pain medication because I enjoy it. My body may need it but my brain hates that fact.

I had a friend question my use of pain meds a while ago. I remember her looking at me in shock and practically screeching, “Aren’t you afraid of becoming addicted to pain medication?” Hmmmm…..another to add to the list of who just doesn’t get it. Then my ex-boyfriend sprained his ankle and acted like the world was ending. I remember him saying, ‘I can’t get together, I had to take 6 ibuprofen and can barely walk!!”  So even with about 12 swollen joints, I drove an hour to se him to make sure he was okay. I walked on ankles that are swollen and sore daily but when I complained, I was accused of “faking it”. (Needless to say, we did not work out). I’m always shocked when people who I consider close to me do not comprehend the level of pain autoimmune arthritis causes. I can’t take a “tylenol arthritis” and feel better. Ibuprofen doesn’t help me walk or brush my teeth. Hell, tramadol doesn’t take all of my pain away, but it masks it a bit so that I can walk and brush my teeth. I don’t abuse it and I would estimate about 70% of my friends living with painful chronic illness also do not abuse it.  Unfortunately, we’ve been lumped in with opioid abusers and it is unfair.

I understand how people do get addicted to pain medication.  An injury can be so difficult to overcome.  Often times, insurance companies won’t cover physical therapy, so patients are prescribed pain medication until they can heal.  When you aren’t getting proper treatment to help you heal, pain medication is the only way to make it through the day.  In my humble opinion, insurance and pharmaceutical companies along with crappy healthcare have caused the opioid crisis.  Unfortunately for people who try to live well with chronic illness are forced to go without as if we have abused the system.  It’s unfair.  It’s important for physicians and politicians to see that people living with chronic illness that causes chronic pain deserve to be treated respectfully.  I don’t abuse pain medication.  I don’t get high off of it.  I need it to accomplish daily living tasks like showering, brushing my teeth and hardest of all…..doing my hair.  I am not an opioid abuser. I am a person living with multiple chronic, incurable, and painful illnesses just trying to function.

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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.

One thought on “RA Blog Week 2018: The good, the bad, and the ugly…

  1. I love the boyfriend story. As a matter of fact that may be my favorite story of day 1. I think artificial limits on medicine we have been taking forever is just wrong. I knwo many stories where insurance companies rectify that a person needs a medical device. but since they have the device they cannot show need without the device. Oh come on.. Sounds about like the Dr. office in this case. I hope got straightened out.

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