Maybe…

I’ve completed the last loading dose of my newest bio similar infusion drug, Inflectra. I know most of my family and friends are waiting to know….do I feel better. That is a tricky question to answer. I met with my rheumatologist and had to have an answer to that very question. My answer:

Maybe

Not what most people who care about me want me to say. Most everyone wants me to say, “Yes, I feel amazing.” Thing is, when I saw I feel good (on a good day) people freak out a bit the next day when I don’t feel well. So like many people living with chronic illness, that question is often uncomfortable to answer. As a patient advocate, I am very aware that many people respond well to this drug, while others do not. That is the catch 22 of autoimmune diseases. Not everyone reacts the same way to treatment.

Thus far, I’ve seen some positive results. I can walk to my work all day AND walk my dog (around the block) when I get home. For months, I could only take her up and down my street which is not what she needs. I can also walk up my stairs at night (I’ve been crawling up for months). So I am seeing progress.

Unfortunately, I am also experiencing a lot of stress which is causing my disease to flare. My mom fell and broke her pelvis and ribs and after a brief stay in an acute rehab center, she is in a skilled nursing home receiving therapy. She had been doing well, but she was diagnosed with pneumonia which adds stress to her body.

I had been traveling back and forth between my home and hers (approximately 2 hours away) to try to get her home ready to return. Unfortunately, my body decided now is the time for me to experience plantar fasciitis for the first time. Which makes walking just a bit more difficult and sleeping very painful. The past few weeks, I’ve been at her home trying to ready it for her return.

My body is tired, my head is spinning, and my heart is sad. As my therapists reminds me, my mom is being cared for, so my job is to take care of her daughter. When mom first entered a nursing home, we were told she would be there for around 100 days. at the most, 60 was most likely due to the extent of her injuries. Medicare; however, decided she was to be released on her 41st day.

Is my mom making progress? Yes.

Is she independent enough to return home to live alone

Maybe

So now, the home improvements I thought I had time to complete in two months, have to be completed in less than 2 weeks. First up? Painting the bathroom. We need to make it more handicapped accessible. It hasn’t be painted in a long time and really needed some freshening up. I originally planned to hire someone….but there is no time. Today, I struggled, but accomplished painting the walls.

Tomorrow I will do the trim. To say that my body is in serious pain is an understatement, but I did it. I’m hopeful I can rest enough to finish the molding tomorrow. I’m praying I don’t have to do another coat on the walls. Again, time will tell…

So coming full circle, is my new medication working?

Maybe

Did I do a good job? My cat Milo seems impressed.

o I have a therapy dog in the making?? Maybe

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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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