Try, try, try….

I’ve been having a difficult time with my autoimmune arthritis. Firstly, I no longer know what to call my disease. I don’t fit any definition completely. Do I have symptoms of Rheumatoid Arthritis? Yes. Do I have symptoms of Lupus? Yes. Do I have symptoms of Psoriatic Arthritis, Ankylosing Spondylitis, Spondylitis, and Non Radial Graphic Axial Spondlyoarthritis? Yes, yes, yes, and yes. My rheumatologist refers to me most often with spondyloarthritis. I don’t know what to call my disease, so I often refer to it as simply autoimmune arthritis. I may not know what to call my disease, but I know that it kicks my ass on a daily basis.

I’ve documented that I have recently I’ve experienced another medication fail. My drug that I felt was a miracle early on, began to only give me 2-8 days of relief a month. The other days of the month have been sheer hell. My level of pain ranges daily between 8-10. It takes almost an hour to stand up in the morning because of the pain I experience in my joints and back. My fingers are so swollen that I struggle to put earrings in, brush my teeth, and unlock my office doors. Don’t ask me about buttons and zippers. There are a no go. As painful as my body has become, it’s often my heart that hurts the most.

Edited in Prisma app with Surf

My heart breaks when my sweet girl cries and whines because I can’t take her on long walks.

My heart breaks when I can’t work a part time job anymore because I’m so physically exhausted after my main job (don’t get me wrong, I make good money, but I still have a lot of Georgia Grace debt)

My heart breaks when I see how I have let my house go because I simply don’t have the energy to clean, organize or redecorate.

My heart breaks that I have gained 60 pounds due to the constant need for steroids to get me through the pain.

My heart breaks because depression and overeating added to the weight gain.

My heart breaks because I don’t get together with my friends because I’m simply too exhausted. I’m not tired. I have no energy left over after a work day. Even Saturdays and Sundays are spent on the couch or in bed to attempt to recharge my batteries and to stay off my feet. So I can continue to work.

Several colleagues of mine have asked why I don’t go out on disability. It’s a good question, but one I don’t know the answer to. In my state to qualify for disability I need to meet the following criteria

  • You must be unable to do any substantial work because of your medical condition(s); and
  • Your medical condition(s) must have lasted, or be expected to last, at least 1 year, or be expected to result in your death

I meet the 2nd criteria, but I’m not sure I meet the first. When I say that to some people they look at me and laugh. I guess I see myself as being more physically capable than others do.

I’m a speech-language pathologist. My job is to help people communicate. I can do that. It’s the non-speech therapy things that are difficult for me. Typing up reports, walking the long hallways, walking to answer a phone that is all the way on the other side of the room. Are there ways to work around this? Yes. Will my job assist me with ADA accommodations? I don’t know.

I’ve seen other people deal with ADA accommodations and it’s never gone easy for any of them. I’m avoiding it because one more stressor might be all it will take to break the camel’s back. Managing my health, my home, my job, my family, and my pets has drained me. It’s like Christine Miserandino says in the spoon theory. Once the spoons are gone, there is nothing left. Working with my therapist, I’ve learned that I put out so many spoons for others (through work, family, and pets) and I never have any left for myself. Doing what is best for me has never really been my strong suit, but it is time.

Right now, I’m trying out infusions to see if I can regain a better quality of life. I’m trying to remain hopeful, but if I am being honest, the plethora of medication failure has jaded me. I don’t know if I will ever feel better, but I am going to keep trying. I’m determined to find a balance of work, pain, and living.

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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.

3 thoughts on “Try, try, try….

  1. Hi Kelly, would love to talk to you and catch you up on Paul Avram’s life. You saved this child many years ago and it sounds like you could use some good news. I will never forget what you did for our family. You have been a blessing and a saint to so many kids.

    Like

  2. Kelly, at my house we call what I have – Rheumatoid- soup, like duck soup, no one knows what really goes in and or how to make it better.

    I am with you on needing another source of stress in your life. I mean who needs more stress. But, here is the big but, I suggest you consider talking to your personnel office about STD and LTD coverage in your contract. You might be surprised at what you find.

    rick

    Liked by 1 person

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